It’s the beginning of a new era for the Hoopes Family. Our lives are filled with packing, cleaning and painting right now. Why? Well, because as of Monday, we own a new house. It’s about 20 minutes north of here in a quiet little neighborhood.
I can’t remember if, when I was writing about Patrick’s tonsils, I also wrote about his name having come up in the lottery for a special needs charter school. I was so buried in tonsillectomy recovery with my husband out of town that all I could think to do that week was complete the required paperwork.
Well, things settled down a bit and we decided we’d better figure out what needed to be done to know if we wanted Patrick to attend that school. I’ll be honest, my first impression was that I didn’t want to give up all of the great things I had going on right then and didn’t see any reason at all to move.
BUT I did follow through by setting up some school tours and meetings with the school principal. And, well, given the length of the drive (and the added complication of having to use the freeway for the commute,) I decided to look around the neighborhood in case Patrick did great at the school and we wanted to consider living closer.
Well, from that moment on, we just couldn’t seem to leave the investigation alone. A house caught our eye, we looked it up. Found flaws. Then another appeared. I couldn’t stop thinking about it so I drove out to see it. It wasn’t right. Nor was another. And we didn’t really think we were house shopping. Just getting to know the neighborhood.
Until… Brian spotted one nearby but NOT in the neighborhood we were looking at. We did a walk through and as we talked about it we could see so many great things for Patrick’s future in that house. A quieter neighborhood, proximity to parks, proximity to a great school, space for a bedroom downstairs and away from us when he gets older.. and the list went on and on. As we talked, I was filled with this sense of total peace.
So before we found an answer about the school and just 2 weeks after even discussing the possibility of moving, we put an offer on a house.
The rest has fallen into place very quickly. Through a ton of quick work, we cleaned up our house, did some staging, held and open house. And found a buyer. In fact, not just a buyer but one we’re really excited about selling the house to so we don’t feel quite as guilty for leaving. The financing came through in record time. The sale came through without a hitch.
And so by the end of this week, we’ll be moving. I’m not ready. It’s gone SO fast! And I’ve got just this week (one Brian’s working evenings in, even) to repaint the entire basement, finish packing, be present during Patrick’s last 2 weeks of school, tie up loose ends with PTA and church.. and be ready for the movers to come on Monday.
I am exhausted and I hurt everywhere. And there is so much still to do.
That brings me to another new thing in our family. Mostly, another new thing for me. Remember that post a few months back where I said that I just kept developing tendonitis everywhere as I tried to get in shape? And did I mention as I wrote about Patrick having EBV that we think I had it too?
I know I didn’t mention that at the end of November one morning I woke up and I just couldn’t walk. My knees were swollen and unsteady and it felt like I was ice skating. It took about 4 weeks to finally get to the point of doing cortisone injections which restored function pretty immediately. Except that things weren’t quite right. Not in my knees. Or my wrists or my elbows.
Well I finally got enough of a moment of quiet to go to the doctor who said, no, none of that is normal results of going from inactive to active. She ordered several blood tests looking for autoimmune diseases and other things.
And, well, one came back positive.
As it turns out, I have rheumatoid arthritis.
Our theory is that it was kind of there latently.. but when I started to exercise it brought it to the surface. And then, when I got sick (possibly with EBV) it triggered the auto-immune response.
RA is a lifelong, chronic illness with some pretty scary possible outcomes if left untreated.
The good news is, it’s one of the ones they are having success in treating. And we caught this quite early, we think.
So with immune suppressants, my new doctor thinks that he’ll be able to put the disease into remission and really minimize it’s effects.
It’s scary. The drug I am on is some very serious stuff. I’m now scheduled to have labs and follow up visits as often as Patrick is. This is a HUGE life change.
On the other hand, I’ve only given myself just one shot of the new medicine and it gave me 3 wonderful days with very little pain. The doctor said that in about 3 weeks it may be built up enough in my system to be considered remission. And it’s great to know that this hasn’t been all in my head, or because I was out of shape, or wimpy, or bad at taking care of myself.
And I’m thankfully so very busy with the move that I can’t really think too much about it right now.
It’s been such a whirlwind that it’s kept me, in part, from thinking too much about all the things that we’re leaving behind. I did lie awake fretting about that a lot at first. We really do have a beautiful home with wonderful neighbors. I’m going to miss my kitchen, my gardens, just being in the neighborhood of my family.. and most of all, I’m going to really miss my friends.
The only thing getting us through is this amazing peace that I feel whenever I drive out to our new home. The Lord is providing that in ample doses. And I know it’s where Patrick and we belong.
On the first day of March, I sat in the 3rd grade classroom where I volunteer and I listened to the teacher, Mrs. H., explain to the children that March is either lion or lamb. I had been thinking it, too. We all have heard it. “March comes in like a lion and goes out like a lamb.” We made crafts about it in school. Only Mrs. H. proposed a different idea. Whichever way comes March comes in, it goes out the opposite way. And that particular first day of March, despite a cold wind, was overall quite warm and sunny. She told the children to watch and see if March would go out like a lion.
I saw a lot of lions and lambs in the last few weeks of March this year. The spring equinox was early this year, and so also was Easter. For school schedules, that meant that spring break came earlier than usual this year, too. In some ways, it was just on time for our family.
March started out a little harder for Patrick. And very busy with work and other responsibilities for Brian. Our lemon of a Jeep misbehaved one too many times for our taste. Actually, its radiator literally blew up, revealing another potentially time-consuming and costly repair. And so we decided it was time to buy a new car. That’s great news. And a lot of fun.
Unless… you happen to have an uncontrollable obsession with cars. Shopping for, purchasing, and then adjusting to a new car proved exceptionally difficult for Patrick and led to him being unable to concentrate at home or even at school.
Brian’s work got especially busy right around that time, too. He crammed a business trip, some off-site planning meetings, and 3 middle of the night system upgrades into a period of about 2 weeks. All while fighting a monster of a cold.
And so when spring break rolled around, I think we all found ourselves more than grateful for the opportunity to escape. Brian saw the long school break on the schedule and decided to treat our family to a vacation. And, as we really only know how to really relax in one place, off to Disneyland we went.
It was a great trip, honestly. With the newfound attention-span Patrick’s medications have given him, he’s started to enjoy feature-length movies of late. And his favorite of all is Cars. He recognizes scenes in the movie from his trips to Disneyland (instead of the other way around, which is priceless.) And so was extremely excited to get to visit Radiator Springs, eat in Flo’s Diner, dance with Luigi’s cousins, and meet all of his friends in person.
We crammed as many rides into our trip as possible. We splurged on a character dining dinner the night we arrived. Patrick loved having mac & cheese pizza, mashed potatoes, corn on the cob, an a bowl of M&M’s while being visited by his favorite characters. Pluto even let him feed him. As a bonus, we then skipped meeting characters this time around, allowing time for extra rides instead. We stayed in a hotel with a pool and went swimming as a family for the first time since Patrick had his line removed. We watched firework on our walk back to the hotel every night. We didn’t sleep enough at night, but enjoyed early mornings in the park. It was a fun trip.
We came home on Saturday afternoon to give ourselves time to get ready for Easter the next morning.
Oh, what a time for the message of Easter for me. While we were in Disneyland, two babies were born in my family. I have a new niece and nephew. Born just a day apart. So before Patrick returned to school, we went and met the new babies.
He doted on them. Patrick loves babies. He kept asking me if he could bring them home. He hugged them too tight. He kissed them. And he promised them he’d be their friend forever. Oh, how he made my heart ache to let there be a baby in our house.
And, oh how he reminded me that it is anything but possible right now. In all his loving attention, he has no idea how strong he is, how fragile they are. And he just can’t understand that they can’t get up and play or eat or talk the way other people can. So thank goodness for baby cousins right now. Because we need babies in our life, even when we can’t have them in our home.
So in the mornings, I kissed and cuddled babies. In stark contrast, in the evening, I said goodbye to a dear friend.
One of the wonderful things about my church is an organization called the Relief Society. Everwhere the church is, the women of the church are gathered together in this organization. And it doesn’t matter how different you may be in age, background, culture, or wealth.. you are sisters. The neighborhood I live in was built new just long ago that many of the people who built the homes originally are reaching the ends of their lives. And so you’d think I’d get used to having to say goodbye to these sisters from time to time.
But sometimes they work their way into your hearts a little more. This friend and I loved many of the same things, despite differences in age. She was a teacher and invited me to translate in her classroom. She was a musician and loved to invite me to sing, and then push my abilities with difficult songs. She was one of Patrick’s biggest fans. And although I’ve known for a couple of months that she had been diagnosed with a terminal illness and that her death was quite merciful, still I think this is one goodbye that will stick with me for a while.
Especially because of timing. In the week after Easter, I greeted two new babies and attended a funeral. In fact, the day of the funeral, I spent the afternoon with Patrick at the 10th birthday party of a classmate. What an interesting sampling of milestones. To see the bookends of life so close together has made me think about the volumes inbetween them.
When I was in high school, we had to memorize a soliloquy from Macbeth. With his castle under attack and everything falling around him, Macbeth receives word that his wife has died. And his reply:
“She should have died hereafter; There would have been a time for such a word.
To-morrow, and to-morrow, and to-morrow Creeps in this petty pace from day to day, To the last syllable of recorded time; And all our yesterdays have lighted fools the way to dusty death. Out, out, brief candle.”
I’m not sure exactly why this pessimistic eulogy has been in my mind. Except the knowledge that it is so wrong. Because life is brief, but so much more than “signifying nothing” as Macbeth lamented. In fact, a funeral reminds us that it is, in fact, all the little nothings, all the everyday things. all the tomorrow and yesterdays and todays full of mostly mundane things that add up to what matters.
Because death isn’t the end. It’s not a period. It’s a comma.
Easter celebrates that fact. Because Christ came. Because of his sacrifice. Because he died, and then after 3 days was resurrected, we all will live again.
There is something wonderful to hope for.
However, I feel that being a full-time caregiver is so perfectly captured, though, in the words “tomorrow, and tomorrow and tomorrow creeps forth in this petty pace from day to day.”
I’ve been struggling a bit this month. I have been feeling lost. Invisible. Mundane. I don’t have the hang of this new life. I have more time, but not complete freedom. I’m not fighting for survival every day, but there is still a lot of resistance in our lives.
Every day certain things must be done. I clean the house and do laundry and do the dishes. I sweep the crumbs of Patrick’s snacks. I put the toys back in the toybox. I shop and plan and make dinners. I prepare medications by measuring, cutting, crushing, and mixing, and then make sure they are given on schedule. I help with homework. I encourage reading. I dress and undress my son. I remind Patrick how to wash his hair. I bring in the mail. I clean off the kitchen table. Over and over again. Only to need to do it again the next day. Or the next hour. I’ve been kept just a little too busy to dare make time for myself but had just enough free time to fret over it.
I’m struggling to get the courage to take time for myself. I’m so used to abandoning what I need to do to take care of Patrick that even though I have a little bit of time, I am timid about branching out. I don’t trust that I’ll be able to finish what I start. And that then I’ll be upset. The problem is that this is kind of a lonely way to approach life. I’m trying to reach out and reestablish relationships that got pushed aside when I didn’t have time to do anything more than survive each day. But that takes courage, too. And although I may sometimes choose to be outgoing, deep down I’m pretty shy.
But, like you, like most of us, I know the best I can do is get up and try again each morning.
We often compared the life we led with Patrick before transplant to a rollercoaster. Thrilling highs and followed by quick plummets. I’d learned to live with that kind of thrill ride. You just hang on tight.
But in Disneyland this last trip, Patrick discovered a new favorite roller coaster: Goofy’s sky school. Instead of fast ups and downs, this ride is a much more gradual descent. Instead, of hills, it’s full of sharp turns that knock the breath out of you. The track is obscured so you don’t always see it coming. Sometimes that’s what this new version of life feels like. It’s been a year since Patrick’s last hospital admission. That is ASTOUNDING to me! It’s been a year since we had to drop everything because he was suddenly fighting to survive.
Let me tell you a bit about what the ride is like these days. It’s gentler, for sure, but it’s no “It’s a Small World” cruise.
Patrick’s been struggling with behavior at home and at school. And every note home or call home has left me feeling helpless because, unlike problems with his health that had prescribed medical solutions, this isn’t straight forward. They turn to me for answers and I don’t have them.
He’s doing ok. We’ve been experimenting with changes in his medication and the changes are helping. He is doing better. But the transition has been tricky. And I don’t know if it’s been that, or illness, or hayfever, or growing, or something else but he has been tired and grumpy and not himself. Medicine is more practice than science and when it comes to brain injury, that’s especially frustrating.
We increased his dose of clonidine to see if we could help afternoons go better, and he started to need a nap every day. He hates naps. But he can’t function sometimes without one. I even had to check him out of school and bring him home to nap last week.
We’ve talked to his psychiatrist and adjusted that dosing and talked about trying some other things. It seems to be helping. But it still feels helpless.
We had a good scare right before spring break. Patrick was knocked off of the playground at school and landed flat on his stomach. It left a bruise where his g-tube hit and so I had to squeeze in an emergency visit with his GI to check to make sure that his graft wasn’t at risk. That’s a possibility with any injury to his abdomen.
Perhaps the most frustrating thing is that out of the blue, his oral aversions have gotten worse. He won’t take his vitamins anymore in the morning. I crush them and mix them in yogurt so they are easier to eat. He sticks his tongue out to block them going in. Or holds them in his mouth and doesn’t swallow. It’s miserable to watch. But they aren’t optional. They’re mandatory. And so we start many days with me pleading with him to do something that he thinks is torture.
He sprained his ankle at the birthday party. He tried climbing onto a bunkbed and fell off. Patrick’s never really had this kind of injury. With his cerebral palsy, he was especially unsteady limping. He also isn’t used to regular illnesses or injuries still, so he was extremely afraid. Asking him to do what little might help.. Elevation, ice, rest. That only scared him more. He needed extra help getting around, getting dressed, bathing, etc. Thank goodness it was conference weekend so it was ok for him to stay home. He’s spent a few days inside at recess at school. But thankfully he’s healing. He’s limping, but can jump and run and stomp while limping.
I’m grateful to have had a couple of weeks of bookends. A couple of weeks of being shown things to make me think about what I’m putting inbetween. And a reminder that there are often many volumes in our life. We’re put away the one called “Ultra Short Bowel Syndrome” and are nearly done with another called “Transplant Recovery” but this latest volume of “First grade” has certainly had some unexpected plot twists.
I’m sometimes tempted to pen, like Shakespeare, that tomorrow and tomorrow and tomorrow just keep creeping at their petty pace. But that feeling is only a page in the story.
I heard a talk this weekend that’s helping my sentiments for tomorrow. It was shared in the semiannual general conference of the Church of Jesus Christ of Latter-Day Saints this weekend. The speaker was Elder Jeffrey R. Holland, an apostle and a gifted teacher. Here’s a brief summary.
First, he shared this image that kind of sums up how I sometimes feel when I’m headed to bed and thinking about what I need to do the next day.
Then, he gave this counsel about how to proceed.
“If in the days ahead you see not only limitations in those around you but also find elements in your own life that don’t yet measure up… please don’t be cast down in spirit and don’t give up….”
“Please remember tomorrow, and all the days after that, that the Lord blesses those who want to improve, who accept the need for commandments and try to keep them, who cherish Christlike virtues and strive to the best of their ability to acquire them. If you stumble in that pursuit, so does everyone; the Savior is there to help you keep going. . . ”
And then, in contrast to the pessimistic message of Macbeth, Elder Holland gave this beautiful description of the potential for tomorrow.
“If we give our heart to God, if we love the Lord Jesus Christ, if we do the best we can to live the gospel, then tomorrow—and every other day—is ultimately going to be magnificent, even if we don’t always recognize it as such. Why? Because our Heavenly Father wants it to be! He wants to bless us. A rewarding, abundant, and eternal life is the very object of His merciful plan for His children!”
Did you read that? Tomorrow=magnificent. Even if we don’t always recognize it as such.
I’ve got a long way to go. I have a lot to learn about patience. And a lot to learn about humility. I’m finding those lessons are taught in the long, flat, tedious prairies. Not on the peaks.
It snowed the last two days of March. I had to scrape ice off of my car on the last day of spring break. Mrs. H was right. March came in like a lamb and went out like a lion.
It wasn’t an easy month. And April has started out with it’s own measure of sound and fury. We have more milestones: another funeral and a wedding ahead this week. And will still start each and every day with a yucky vitamin.
But I’m trying remember Elder Holland’s words:
“So keep loving. Keep trying. Keep trusting. Keep believing. Keep growing. Heaven is cheering you on today, tomorrow, and forever.”
Hi there! I’m typing to you from a laptop that is sticky with starburst fingerprints. It’s been quite the day. We’ll call it “February isn’t over yet.”
If you deal with chronic illness, especially in a child, you know that February is something to be greatly feared. Sure, I bet when you think of cold and flu season, you probably think of, oh, say December when everyone’s sharing colds around as they visit each other for the holidays. February is much, much worse. February is respiratory illness wonderland. it’s when the hospitals fill up to overflowing and they start putting beds in the broom closets.
According to Facebook’s memories, Patrick has been sick and often hospitalized pretty much every February of his life.
I wasn’t sure how we’d managed it. The children at Patrick’s school are walking around looking like death. Everyone we know has been sick. And yet, our immunocompromised superhero has been healthy.
Well… had been healthy.
This morning, Patrick did something he’s never done before. He told me, “Mom, I think I have a cold.”
Please note, this doesn’t mean he’s never had a cold. He’s had lots of cold. Doozies of colds. He’s been admitted to the hospital over many, many colds. But because of that exact fear. Being sent to the hospital… he doesn’t admit to being sick.
I was super proud of him.
And I decided to listen to him. Patrick really isn’t very sick. If he hadn’t said anything, you might not even know for sure anything is up. He is so good at pushing forward through things. But he’s been extra sleepy. A little grumpy. Restless. And has had a bit of a cough. Today, we added on an adorable nasal-y voice.
But, really sick or not, Patrick already had a checkup scheduled at the hospital at noon. And so he was going to attend less than 2 hours of school anyway. Which means no credit for the school day at all. And so – we kept him home.
One thing that all these years of medical surprises has taught me is how to throw all my plans to the wind and dive into super parent mode. I did pretty darn awesome today, if i do say so myself.
Because he wasn’t crazy sick. And because he LOVES schoolwork more than just about anything. And because yesterday we tried resting and watching TV which only led to a very restless child… I told Patrick he could stay home but only if we did school at home.
I let him take a longer bath and while he was in the tub I e-mailed his teacher to ask for a list of spelling words. I roped off Howie’s office, since he was working from home today, which is a huge temptation for them both. And then, while he played with toys for a bit, I hopped onto Teachers Pay Teachers and downloaded some freebie homework sheets for him. Some math. Some reading. A cut and paste word family page. AWESOME stuff! It is so much easier going and getting him relevant homework when I’m not trying to pull my own curriculum out of thin air.
And then, after doing a few pages of work, I pulled out the chromebook and i logged him into the websites that he works in during computer lab at school and set him to work. We had a blissful half hour where he worked independently! Then we went to the backyard and had “recess” and talked about what to do next.
Patrick voted that he wanted to eat lunch in the hospital cafeteria. Don’t fault us for unusual comforts developed over the years.
So we packed up early and drove off to the hospital. We started out in the outpatient building’s cafeteria but alas, they had a menu that was more fancy than comfort food… hospitals do that sometimes so the staff won’t get bored of what they eat. But thank goodness the main hospital cafeteria still peddles good old comfort food fare. We got Patrick a bowl of macaroni and cheese while I grabbed some deli-case sushi. (Again, don’t mock our comforts). Then we picked up two rice krispie treats and a carton of milk and booked it back to the outpatient building for his appointment.
We checked in, weighed in, checked vitals, and then set up lunch in the exam room. A family tradition.
The checkup went well. Our experiment in g-tube boluses of carnation instant breakfast has paid off in some weight gain. And, though they were a little disappointed to hear that his diet isn’t currently all oral, his doctor pointed out that “that’s why he still has a g-tube after all.” and the dietitian agreed that it might help train his stomach to want food at the times we’re giving him these extra feeds and that’s good. We talked about some longer term strategy.
And then Patrick talked his doctor into drawing him a picture of a monkey as a “prize.”
This appointment went remarkably quickly as far as GI visits go. We can sometimes be there hours. This time we were done by 1.
And so, not wanting to referee “don’t bug dad at work” time too much longer, I offered Patrick a field trip.
He’s been working on the astronomy-with-a-cute-name belt buckle in cub scouts, so we stopped at the planetarium to help him with that requirement. It was a madhouse. There were at least 2 school field trips there. But Patrick seemed relieved to run wild with the other children. And I still managed to point out and describe the planets to him, and telescopes, and other astronomy stuff. Then we stopped in the gift shop and let him pick out a bookmark/ruler with the planets on it. And amazingly, he was reciting some of the names back to me. He is very offended that Pluto isn’t on his bookmark, even though I tried to explain dwarf planets. Aren’t we all.
Anyway… home again and this time convinced him to take a nap.
He woke right on time for me to tuck him into my bed to watch Blues Clues while I threw together dinner and tidied up the house before our next appointment.
A nurse came this afternoon to officially admit Patrick for respite nursing through the Utah Medically Complex Children’s Waiver. This is on top of the other respite we already have and feels a bit splurgy. But it’s required for him to participate in the waiver. And it’s required that it be done by a nurse. So we are doing it.
Patrick was a total flirt with the admitting nurse and she played along beautifully. Meanwhile, I did my best to communicate a clear medical picture. You know you’re a medical parent when you know which diagnosis needs to be listed in each system. And when you provide a list of medications in writing so they don’t give a copy back to you.
Anyway… that done, I cooked dinner and Patrick played with the chromebook. Don’t tell him that we bought this thing largely for him. Because you can’t tell him it’s his. He wants it. But that means he wants there to be no rules about it. And besides, I like to blog here.
While dinner cooked I managed to convince Patrick to do one math worksheet. And then after we ate, we sat down and had him practice writing out his spelling words. I told his teacher I didn’t think he was being challenged and now he had 5 words again this week. Usually, that would be just right. Today though, he wasn’t feeling great and he wasn’t happy to do so much writing.
Bedtime finally came and he got exhausted quickly. We scrapped our Family Night plans and just worked together for a quick bedtime. Complete with antihistimines (he’s not allowed any other cold meds) and vaporub and a humidifier. He was asleep in minutes.
I don’t know what tomorrow will bring. Howie and I are for sure also coming down with something. And i’m not sure Patrick will be up for school tomorrow. But it’s labwork morning so we’ll be up bright and early regardless. Doesn’t hurt to see how being sick is affecting his body. And we’ll go from there.
If I don’t post soon, you can probably assume that Patrick slowly got better and needed lots of my attention, and then one day he was better and I looked around and realized just how much else I neglected while in super mom mode. Anyway – usually on this blog no news is good news.
Valentine’s weekend represents a lot of milestones for our family. Two days ago, we celebrated the seven years since we took Patrick to the temple to be sealed to our family. Three years ago, we took Patrick to Nebraska to have him evaluated for a transplant there. It meant moving to a better program, but leaving a lot of comfort behind. A completely foreign city, a huge hospital, and no one we knew. And then one year ago, we arrived home with Patrick after he’d received his transplant, evidence of a miraculous recovery.
And then yesterday we added one more. Yesterday, Brian (also known as Howie, if you are ever confused by my mixing names in this blog post) was called to be a counselor in our bishopric.
A bit of explanation for those less familiar with the Church of Jesus Christ of Latter-Day Saints. The “Mormon” church has a lay ministry. That means that we don’t have professional clergy. At all. Some full-time. But none are formally trained. And none are paid. Instead, we are all trained as a part of “bringing up” in the church and we all take turns. Every 5 or more years, a new bishop is called. His service is voluntarily and in addition to his regular job, but no less real in its demands. He is a pastor to his congregation. Leader, comforter, judge, and friend. And he is helped in his work by two counselors. Brian was just made a counselor. (And in order to serve in that assignment he was also ordained a high priest.)
But this blog isn’t about Brian or about bishoprics. It’s about our family and our journey together. And so I’m going to share some reflections I’ve had as we prepared for this new assignment. (See, even though the news was only announced yesterday, we’ve known for a few weeks and I’ve had some time to think.)
A phrase came to my mind a few days ago. “Whom the Lord calls, He qualifies.”
And so I’ve been thinking about the calling I’ve been pursuing for the past seven and a half years. My calling as Patrick’s mother.
Seven and a half years ago, I took that a phone call, my life changed. But I don’t think you could say that the Emily who answered that call about a boy who needed a family was qualified to be a special needs mom, a short gut mom, a TPN mom, a transplant mom, an autism and ADHD mom, a feeding therapy mom, a food allergy mom. I had tried to prepare to be a mother. I had often wondered if I hadn’t been given the chance yet because I wasn’t really prepared to even be a mother. (I wasn’t so very wise then, was I?)
Some people say that special children are only given to special parents. And I don’t think that is true. At all. I’ve watched hundreds of moms in the support group I run learn about their children’s diagnosis and realize that they don’t have even the beginning knowledge required to do what is required of them.
I certainly wasn’t equipped. I was impatient. I was just learning how to handle my anxiety. I had panic attacks when schedules changed. (Umm, drop everything and run to the ER? What?) I was absolutely phobic of doctors and hospitals and especially surgical procedures.
When I took Patrick for his transplant evaluation, I had learned a lot and was a seasoned medical mom. But I couldn’t have imagined what that experience would be like. The pain he’d be in. The effect his medications would have on his moods. The trauma we’d both have to learn to live with. And though I knew being far from home and without my husband would be hard, I couldn’t have prepared for it.
When we brought a “new” Patrick home, I wasn’t prepared for the growing and changing that would happen this year. The sheer weight of trying to learn a whole new way of life. A new gut in many ways opened doors to a new him and needed a new kind of mom.
I wasn’t qualified for any of these things when I started them. But I was willing. I was teachable. And I trusted that the call came from the Lord.
I have received a lot of on-the-job training. I have had solutions to problems come to my mind with such clarity and perfection that I know they can only have come from a knowing Heavenly Father through the Holy Ghost. I have shed lots of tears when I didn’t feel I was measuring up. And then I’ve gotten up and kept trying.
I have learned to rely heavily on friends and family and neighbors, on experts willing to take the time to teach me, on other parents who started out as strangers but became friends.
And I’ve learned that truly, whom the Lord calls, He qualifies.
He does it. Through His grace. If we let Him.
Special children aren’t given to special people. Ordinary people become parents to special children all the time. Ordinary people are faced with all kinds of devastating trials every day. Ordinary people step up and do impossible things every day.
There is a saying that floats around a lot. “The Lord won’t give you more than you can handle.” That isn’t quite right. Here’s what the scriptures really say:
There has no temptation taken you but such as is common to man: but God is faithful who will not suffer you to be tempted above that ye are able; but will with the temptation also make a way to escape, that ye may be able to bear it. 1 Corinthians 10: 13
In other words, “The Lord won’t give you more than you can handle without also giving you a way to handle it.” He uses trials to make us better. To make us more like him. He takes ordinary, willing people and makes them into special people. Or, in simpler words, “Whom the Lord calls, he qualifies.”
P.S. Don’t take this as bragging. I still consider myself far more ordinary than special. But I digress…
Here we are. Another Valentine’s weekend. Another big change. I don’t know quite yet how Patrick and I are going to fare with Brian even busier. I’m sure sacrament meetings are about to be really interesting. And bedtimes.
I am sure that my humble, determined-to-serve husband is feeling a bit overwhelmed by this new calling. I’m also certain that he will do a marvelous job and that the people of our church are going to be really blessed by having him on their side.
And I’m going to do my best to keep up. That’s what I’ve been doing the whole time I’ve known him.
Brian loves to go for walks. When we were newlyweds and lived downtown, he would decide to walk to the city center. That wasn’t a short walk. And with his longer stride, I had to take an awful lot of steps to keep up with his pace. He has taught me quite literally what it means to “lengthen your stride.”
That’s what it is like having him for a best friend and husband. He’s always challenged me to quicken my step, lengthen my stride, and do a little better.
We just got back from Omaha again. It was a short trip. Barely more than 48 hours. In some ways very routine and unexciting. In others, very eventful.
About a month ago, I remembered to ask Patrick’s transplant team if he was supposed to have a one-year follow-up appointment. They said yes.. and then I asked if it really had to happen right on the transplant anniversary. After all, remember, Patrick’s transplant happened both on his birthday and on Halloween. We didn’t really want to spent October 31st at a doctor’s appointment.
They said it didn’t matter, and so we decided to take advantage of Patrick’s fall break. We checked him out of school on Wednesday at lunch and hopped on a plane to Nebraska.
He was crazy excited this time. Or may anxious. I can’t decide. He was happy about the idea of seeing his nurses and couldn’t seem to let it go. We tried to explain that this was just a checkup. But he didn’t settle down until after the appointment. I think because then he knew it was all ok.
Wednesday night, because Patrick was bouncing off the walls, we checked into our hotel but then headed down to the riverwalk to try to burn off some of his nervous energy with a stroll along the Missouri. It was really dark. And it took a really long time for Patrick to settle down. But eventually, he did. And it made him tired enough to sleep pretty well that night.
The next morning, it was cold. Especially for us, coming from Utah’s record-breakingly warm fall. We tried to go to a playground but got too cold. So then we went for a drive just because. We decided we were hungry and Patrick asked for chicken nuggets. So we drove to McDonalds and Patrick discovered McNuggets. I discovered that Sweet and Sour Sauce is made with peaches and so there really are no Patrick allergy-friendly dips available and we settled for ketchup.
Finally, it was time for the appointment. Patrick hadn’t finished lunch so we brought it along and as the team came in, Patrick was munching on french fries. He then decided he was still hungry, and we added on a lunchable.
The appointment was mostly routine. They recorded his vital signs and growth, went over his medications, asked if anything big had changed. Then the surgoen joined us and looked Patrick over. He said Patrick looked great. He said to go ahead and discontinue one of his antibiotics. And we talked about when and how to decrease his immunosuppression one more level. Then I asked some questions I had. Patrick played with the doctor and his cell phone. And then they went on their way.
The dietitian came in to talk to us next and we decided to go ahead and stop Patrick’s tube feeds and see if he can keep up with his nutrition orally. That doesn’t mean that for sure this will work. It means a really focused effort to make sure he’s eating and drinking enough. But it also means some new comfort and freedom for him.
Not doing tube feeds means having to figure out some other things. Like teaching him to take a chewable multivitamin instead of giving a liquid. It also means that we have to figure out a way to give him 1 teaspoon of baking soda in divided doses throughout the day. Right now, that can go along with his meds in his g-tube. But one day, they’d like a goal of him not needing anything by g-tube. They’d even like to remove his g-tube. And so eventually we’ll need to find a way to get him to take baking soda in food.
A few weeks ago, the hospital’s PR department called and asked if we would be willing to let a news crew come to Patrick’s appointment. So there was a cameraman there filming the whole time. (Well, except when the dietitian came in. She is camera shy.) And then we went and did interviews afterwards. It’s so hard to capture this big story in just a few words. I hope we did it justice. We tried taking them upstairs for Patrick to visit with some nurses. That just ended up being really awkward. Oh well. One day, the story will air and I’ll share it here. We hope it gets people talking about organ donation. And maybe express our thanks to Patrick’s donor’s family and also the amazing medical team who got him this far.
We stopped tube feeds that same night. Patrick was really restless in his sleep, too. I don’t know if that was because of the missing tubes. Or if it was because I snore. Or because he discovered how truly heavenly comfy sleeping in down pillows is and spent the whole night trying to figure out if he wanted to sleep in the down pillow more or sleep snuggling with me more. I finally told him I didn’t mind him sleeping on the pillow. He said, “You won’t get mad?” And I said, “No. It’s a soft, soft pillow” and he snuggled down and went to sleep. He’s asked for a down pillow for his bed at home.
After the appointment, we had 24 hours before our flight home. So we did our best to find some family fun. We went to the zoo both days. The first, Patrick wanted to just play outside. We got jumbo pretzels that we ended up sharing with some very demanding peacocks.
And we let Patrick play on the zoo’s playgrounds that we’ve mostly shied away from in the past year. Then, we went to find dinner in Omaha’s shopping district called Old Market. We ended up at a family italian restaurant called Spaghetti Works where Patrick got to experience his first salad bar. He ordered grilled cheese, which turned out to be a very disappointing sandwich made of two pieces of cheesy garlic bread stuck together. So instead, he ate my spaghetti.
The next morning, we packed up, ate breakfast, did laundry. Finally, we had to check out and so we went back to the zoo. Brian splurged a bit and bought all-day ride passes and instead of looking for animals, we spent the day riding stuff. We rode their steam-powered train. (Makes all other zoo trains seems like a huge disappointment.) We rode the carousel. We rode the “ski-fari”, in other words, one of those ski-lifts made amusement park ride.
The ride passes included admission to the stingray encounter which actually turned out to be awesome! They have trained their stingrays to take a piece of fish from the back of your hand with a certain command. And therefore, because they know this command, if you put your hand in the water they right way, they’ll swim over and put their mouth over your hand and suck. They call it a kiss. Also, because guests feed them, the stingrays will come to guests looking for foods. So instead of gathering hoping to snag a quick touch, you have stingrays coming up and reaching out with their fins to get your attention. It was really cool.
It took us all day to figure out how the zoo tram worked and we happened to go exactly opposite the most efficient way. However, that did earn us nice walks through the aviary and lemur island exhibit, which we didn’t do much of in the winter. And then we had a nice long ride to end our day at the zoo.
We went back to Old Market for lunch. Brian remembered that I’d heard of and really wanted to try a restaurant/bakery called Wheatfields. They have a reputation for being really allergy conscious. We caught them 5 minutes before close so we made a hurried lunch decision. But it was delicious, nonetheless. I ordered Patrick his first cream soup. (New option without a dairy allergy.) He had the creamy chicken and rice. Ok. We both did. I ate about half of it because it was huge. But he did great with it, which gives me courage to try more. If you have a great cream soup recipe, sent it my way.
And then, we caught the flight home.
I am super, duper proud of Patrick who made it the entire trip in underwear and without any accidents.
In fact, I’m just extremely proud of Patrick. He discovered this old video on his tablet taken a couple of years ago. It’s of him and me playing at the table. Nothing much. But I can see so many changes.
Patrick’s speech has come SO far in the past year. In the video, he is licking and spitting out fruit snacks and asking me what happens if he swallows. Now he is eating full meals. In the video I’m telling him not to drink too much water so he won’t make himself sick. Now the only concern is if he’s drinking enough. He’s still himself. Dramatic. Adventurous. But without the limitations.
“Scripture says, ‘Search diligently, pray always, and be believing, and all things shall work together for your good.’This doesn’t mean all things are good, but for the meek and faithful, things—both positive and negative—work together for good, and the timing is the Lord’s.” – Neall F. Marriott, Yielding Our Hearts to God
I thought that having Patrick back in school would open up much more free time for things like blogging than it has. However, life is just as busy now as it was before. If not more.
At first it wasn’t. At first, I kind of wandered aimlessly through the days that Patrick was away. I didn’t recognize at first what was happening. I was watching an awful lot of Netflix and I was trying to catch up on things around the house. But I was pretty darn tired and pretty darn disorganized and wasn’t getting through nearly as much as I hoped I would each day. Looking back, I realize that I needed a chance to just reclaim my life a little bit after being a full-time caregiver for a year. I also had to trust that I had enough control over my own life to dare try to do more than these things.
Looking back, it took a lot to teach myself to slow down after transplant. To be ok with days spent sitting in a hospital room or in the Ronald McDonald House just taking care of Patrick. And now that I have the ability to do more, it took a lot to teach myself again that it was ok to NOT just pass the day with as little on my personal to-do list as possible.
That isn’t to say that I’m back to working on my personal to-do list. No, Patrick still commands my schedule right now.
A couple of weeks ago, we went to Parent Teacher Conferences at the school. Patrick is doing great with school overall. I’ve never seen him so well-behaved and engaged in a class. He is making friends. He sits in his seat and he raises his hand. He is making progress in reading, in math (where it turns out that going back and teaching the fundamentals is helping him to be less frustrated), and even in writing despite his severely limited fine motor skills.
However, his qualms about the school bathroom were just getting worse. He went from holding it all day to having accidents. Every day. And then to beginning to have accidents on the weekend at home because he forgot that he was wearing underwear and supposed to make it to the potty.
So, at parent teacher conference, I told the teacher I’d like to take away his pull-ups. However, the district has made the very sucky decision to save money by making special education class sizes almost as big as regular classes. There are 16 kids now in the class that was 9 students when Patrick joined it. Only instead of 16 typical kids, these are 16 kids with learning disabilities and behavioral and medical needs that have to be attended to. I can’t even imagine trying to manage 16 IEP’s. Thanks Granite School District.
And the message I was getting about potty training was: we’d love to help, but what can we do? We can’t afford to send adults out of the classroom.
And so, if I was going to ask to take pull-ups away, I also needed to offer help. Ok. You’re right. I’m under no legal obligation to help. But if I want to do this the right way, to have Patrick succeed, etc.. then I do.
So, for the past 2 weeks I have been meeting Patrick and his class immediately following their lunch recess to help to take Patrick to the potty. At first it went great. Patrick tried when I helped him and, even though it took a lot for him to get the courage, even went with his aide in the room (and me holding his hand.) I set up a super awesome “potty steps” reward system where I put pictures of each of the steps of going to the bathroom on a pill box and put rewards inside for him to earn.
Meanwhile, I helped in the classroom a little. I assisted at recess so lunches could happen on a field trip day. I organized a bookshelf. I helped some kids who stayed in from recess to finish up homework.
The second week, though, I think he figured out that I’d end up staying longer if I was still waiting to help take him to the bathroom. And so he waits longer to go. He waits until a moment where his aide is either gone or busy so I end up taking him alone. And so now we’re reinventing things again. It’s very frustrating. There was one particular day where I kind of just sat in the corner and waited for him for several hours. Finally recess rolled around and he still wouldn’t go so I didn’t go with him. I went and sat at the office and waited. And tears started to come and I had to step outside to calm down. He didn’t go at school that day at all. I ended up putting him back in a pull-up and leaving.
But as I sat in my car reading my scriptures, I ended up reading about patience in weakness. And I realized that that is what this is. Just weakness. Just a human struggle. Just and example of the purpose of mortality. And a temporary one at that. And the Savior’s love kind of healed my heart and gave me a great big dose of long-suffering to go along with this struggle. And we’re still at it.
There are some good things about this plan. It’s snapped me out of my Netflix daze. I only have 3 hours in the morning to get things done before I have to eat lunch and get to the school. So I’m actually working in my time at home instead of puttering around. Also, because I’m trying to leave the school by 2:30 most days even though school isn’t over till 3:30, it has given me a dedicated hour for scripture study and for a daily walk. Both of these goals are easier when I know what time of day I’m doing them. Sure, once weather gets bad, it won’t be as pleasant to leave the school and go find a spot to walk and read.. But we’ll cross that bridge when we get to it.
Seeing this is going to be a long-term process, I asked and asked if I could be more useful at the school. And starting next week, I’m going to start helping with a reading group in a different classroom. This frees me up so I’m not hovering over Patrick but keeps me nearby for the daily “do you need to go yet?” standoff.
I hope someday that Patrick will forgive me for blogging about it.
I’ve mentioned before that I have started to go to therapy. And we’ve been talking a lot lately about PTSD. Our whole family struggles with this to some degree.
The thing about living with a trauma is that words can’t capture it for anyone else. But it becomes a part of who you are on a very deep level. I know that there are some people who don’t like to hear me say that Patrick’s transplant was traumatic. How can a miracle be traumatic? But in a very real way, it was.
One little phone call. We left home. We left friends and family. We left work and school. We left everything routine in our lives. We lived for months under constant threat, never knowing what new life-threatening medical issue might arise. Patrick suffered intense ongoing pain. For a child, that is impossible to comprehend. As a parent, that is one of the worst experiences you can live through. It was temporary.. but that doesn’t diminish how hard it was.
And transplant was only the worst of it. We’ve been living with a miniaturized version of it for years.
Facebook has launched a new “memories” feature that shows me, daily, my previous posts from the past 6 years. For two weeks in September, my daily “memories” were of Patrick in the hospital recovering from surgeries or fighting off infections or praying we’d get one more central line in. No wonder I was an anxious, depressed basket case at the start of September. My body has been taught to brace for a fight when that month rolls around.
I’ve also been working this past few weeks on Patrick’s annual birthday video. I sift through a year’s worth of photos and try to pick the ones that tell the story of his last year best.
Last year, I was 6 months late completing this project as I couldn’t stand to look at pictures of the life that we had left behind when we went for transplant. I had to wait till we were starting to see hints of that life coming back.
But this time around. Oh golly. Looking at these pictures has brought back a flood of memories that I had, quite literally, blocked from my memory. Your mind does that. It compartmentalizes the hard stuff so you only pull it out and look at it when you need it.
I have found myself for the past 2 weeks waking up in the middle of the night with vivid memories of the months following transplant. At first, just our hotel room. The carpet. The sink. Then I could remember the ICU. It really shook me. To remember how afraid I was. How much pain Patrick was in. But as I’ve worked, I have also remembered the amazing support we received from friends and family and strangers alike. The feelings of love. And the sweet comfort from the Holy Ghost telling us this was all in God’s plan and would be ok. And it’s brought me peace again.
I’ll apologize now. When I publish this video. It’s long because I didn’t know what parts of the story to leave out. And it makes me cry every time I look at it.
Anyway – all of this. Where am I going with it? Well, it’s much easier to be patient with Patrick when I look back and realize what he’s come through this year. Not just offering it as an excuse as I started out doing.. but genuinely seeing what he’s been through.
In just one year, he’s learned to walk again. He has learned to eat for the first time. He has learned to go to the potty. He has learned to read. He has learned to do basic math. He has learned to speak in clear sentences. He has learned how to strike up a conversation with an adult (usually about their car). He has learned to not be afraid in the water. He has learned to live without a line. How to drink enough water in the day. He is learning how to be safe while being independent, how to play with other children in the front yard, how to play in a different room than me. He has learned how to wash his own hair and get out of the tub when he is done bathing. If he’s a little bit shy and a little bit afraid doing only one of those new things without his mommy (who he was with 24/7 for most of the past year).. that’s really pretty darn good. And he is really pretty darn amazing.
One other thing. Patrick had a doctor cancel an appointment a month ago when she had to go for an emergency appendectomy. It hadn’t occurred to him before that grown-ups might have had surgeries too. In fact, he’s discovering that many grown-ups have been through surgeries. So if he strikes up a conversation by asking you where you had your surgery, know that he is trying to put his experience into context with other people. Trying to find some common ground with his very uncommon experience.
The conversation usually goes like this: “Where you have your surgery?” You answer with whatever general body part and little more explanation required. He might ask “Did it hurt? Did you cry?” You probably will say it hurt. Then he might tell you, “Mommy have hers in her belly button.” I had a laproscopy to diagnose and treat my endometriosis. You give some affirmation. Eventually he’ll say. “I have my surgery on my WHOLE body.” I usually answer with something like, “Yes you did. You were brave and it helped to make you strong.” Something like that.
In another variant, he might tell you it’s ok to be different. To be mad. To be sad. To talk about your feelings. To be missing teeth. (He’s got two missing and a third wiggy right now.) To be a different color. To be bald. To be “indopted.” And he might tell you it’s ok to eat mac and cheese in the bathtub. That’s all a reference to a book by Todd Parr that he’s been reading about why it’s ok to be different. Just laugh along. It’s also ok to have a pet worm.
Well, Patrick’s been in first grade for 3 weeks now. I love seeing him becoming comfortable at school. He loves his teacher. He has been matched with a very good aide. He’s making friends in his class. I think the work is just challenging enough. So far, things are going well.
It wasn’t our smoothest start. When the official first day of school in the district rolled around and Patrick didn’t go because they weren’t ready, I took it harder than I expected. Not only was I beyond tired at that point, but I felt a little left behind. We did our best to make sure that Patrick didn’t know the difference. And thank goodness his respite provider was trying to pick up extra hours before leaving for school because she came and kept him company that few extra days.
I also decided that if you can’t be in school when everyone else is, you might as well take advantage of it. Patrick Make-a-Wish trip came with free passes to several amusement parks for a year from the date of his trip. Including one near home. So I hinted, maybe even begged, Brian to take the afternoon off of work and we went to play at Lagoon.
We did it kind of spontaneously so we surprised Patrick with it. I don’t think he knew that we had roller coasters close to home. He could have stayed all day. In fact, used to Disneyland 3-day-passes, he was a little confused when we left and didn’t come back the next day.
He was a little skittish after trying the regular “white” roller coaster.. a good old fashioned wooden rollercoaster. So kiddie-land was his cup of tea. Especially when he got to “drive a car” all by himself. I think he’d have stayed on that one ride all day. We stayed till we got tired and cold from being wet from the water rides.
And eventually, Monday morning did come and Patrick got to go back to school. I spent most of the first couple of days going back and forth training the school staff. They were very nervous about lunch and potty and g-tube medications and allergies. So I’d come back at lunch and for mini training sessions. And I think I eventually helped them see that what we were asking is new but not really hard. And, honestly, not really necessary most of the time.
I think Patrick’s doing pretty darn well at school. We all wondered how he’d take being away from home for 7 hours a day. That is probably the hardest thing. He comes home exhausted every day. He had been used to a mandatory afternoon rest time and he’s not getting that right now.
He’s also starving when he gets home to me. I think he’s doing pretty well eating away from me for the first time. But sometimes the temptation of friends and recess is great and he hurries through lunch. Thankfully, his education plan includes snack times and a water bottle at his desk and he’s doing ok with those things. But I’m not surprised that he’s lost a little bit of weight since school started and I’m not certain that we’re going to make the goal of 100% oral eating this month. (It’s hard when we are 95% there!)
But we’re starting to get a routine regardless. Patrick’s school starts late so there is time for me to make sure he gets a good breakfast at home before we leave. If we’re really on point, we even get to the school with a little time for him to play on the playground. Then we visit the potty and then take Patrick to computer lab. Because of the breakfast in the classroom program, I drop Patrick off there so he misses that extra allergy risk.
After school, Patrick expects me to be waiting with a piece of string cheese. We are finding that letting him have a single small portion of dairy once a day seems to be the right balance and he’s in love with string cheese. Then we drive home and he gets to snack and play and rest however he chooses. Lately, his preference is to play in the yard with his ride-on car and bike and hope that the little boy across the street will come join him. But some days he’s tired and so we snuggle up on the beanbag in the basement and watch TV.
After dinner, we buckle down and do his homework. We’re trying to figure out the right balance between making him practice writing and making sure he doesn’t get frustrated. Dyspraxia, or motor impairment from Patrick’s brain injury, makes writing frustrating sometimes. Especially when he’s tired. But with a mix of stamps and tracing we usually make it through.
So far, he’s putting up with math better than I’m used to. They’re working on writing numbers and counting right now. Basically, he’s working in the math book he started but didn’t get a chance to finish last year. This is good. I’m wishing I’d realized I had access to that when we were in Nebraska because it gives a better foundation.. But at least he’s getting it now.
They’ve put Patrick the medium level reading group at school. He’s still got some to make up from kindergarten there, too. But he has a real knack for it. He is reading me little sight word/rebus readers every night right now without any hesitation. And he aced his last spelling test.
The biggest struggle right now is the potty at school. Because Patrick knows how to push through being uncomfortable, he seems to be having little problem with the idea of holding it for the entire school day. At first, he was just making it till his aide left at 2. But I put him leakier pull-ups. One accident and he started waiting for me to come at 3:30.
I started praying for a solution and the Lord sent a very interesting solution. A stomach bug.
We went to Denver for Brian’s nephew’s baptism. And on the 2nd night there, Patrick woke up at 1:30 a.m. and asked me to take him to the potty. Note: Patrick has historically had pretty big anxiety about unfamiliar potties. So that really surprised me.
The next day, that kind of became the story of the day. Trips to the potty. Lots and lots of trips to the potty. My knees were sore from all the trips up and down stairs and kneeling on the floor.
We were pretty worried about this. Diarrhea is a REALLY bad thing for intestinal transplant patients. It can mean rapid dehydration. It can mean developmental setbacks. And it can be a sign of rejection.
We should have been comforted that Patrick ran no fevers. At first we were. I was pretty certain that his upset stomach was a side effect of my letting him try both whipped cream and sour cream in the same day. But to the transplant team, no fevers made the odds of rejection higher. His symptoms lasted almost a week before improving and we had lots of conversations with his wonderful GI here as well as the transplant team in Nebraska. Thankfully, his labwork stayed stable. And I’m pretty proud of our ability to keep up with hydration using pedialyte through his g-tube.
Then, a few days in, I came down with the bug too. Who knew I’d ever be grateful for catching illnesses from my son. But it tells us when something is contagious and not malignant. And so far, I think it means that he gets to miss the opportunity of a sedated biopsy.
Patrick missed a couple of days of school because of being sick. But at least for me, he started using the potty there. And if he at least will go when I drop him off and pick him up, that’s one hour less of him just trying not to go. He’s gone for other teachers, too. Just not his aide.
As for me… well, I don’t think I have the hang of things personally yet. I’m struggling to figure out how to work in appointments with school. Patrick’s had two half-days missed to go to appointments and subsequent make-up work. Plus make-up work for sick days. I’m grateful that his teacher sends the work home so that he doesn’t fall behind. But he’s not so much of a fan of the extra homework.
I’m not sure quite what to do with myself during the day, either. The first couple of days. I did nothing. Binged on Netflix. Ate foods that I wouldn’t make with Patrick home. (That first lunch that I didn’t have to consider Patrick’s food was a strange feeling.)
I’m doing some better quality scripture study for the first time in a while. I’ve even got a study notebook that I’m writing in. I’ll admit, though that I tried going back to traditional paper scriptures and I’m too hooked on the features of electronic study on my phone or tablet. It’s too nice to follow a footnote with a link or search a thought on the internet and find more information on it. Plus, I’m building a pretty nice little electronic annotation library of my own. (Seriously, look into the LDS Gospel Library App sometime. It’s got so much more in it than just fitting the whole Bible, Book of Mormon, and sunday school and institute manuals in your pocket.)
Some days I’m diligent and work on cleaning. I still feel wholly in over my head there. We have deep cleaning projects left from the summer before transplant. But I’m doing my best to chip away at it. I’m doing much better keeping up on the regular cleaning and the yard work. I’ve cleaned out a few cupboards. Cataloged surplus medical supplies to donate. Canned tomatoes. Practiced the piano. Gone for walks. Finished a book. Filed medical bills and spent a lot of time on the phone making sure the last of what’s left from this spring is squared away.
A lot of my days have still been devoted to taking care of Patrick so I haven’t really scratched the surface of what I dreamed of doing with this time.
But today – well, today I decided it was time to update the blog. I’ve put it off too long. And when I get behind, it’s always harder to write. Because I know the post will end up long like this.
I dream of a schedule where I have blogging day and laundry day and volunteer at the school day and regular exercise and study and visits with family. Maybe someday.
I reread what I wrote last night and realized that I got tired and stopped short of finishing telling you about our day. I didn’t tell you anything about speech therapy.
After being away for 9 months, we finally decided it was time to go back to speech therapy. We only just barely arrived on time, because we were coming from the meeting with the school. Thank goodness my sister had tagged along to help with Patrick or he would never have done so well.
But he DID do well. His therapist hasn’t seen him in a really long time and it was fun to see her reaction to his progress. Because speech is one place where Patrick’s progress is simply amazing. Being able to find car keys like a french pig finds truffles, Patrick found his therapist’s key on his therapist’s desk, brought it to her and asked “Do you drive a Volvo?” She laughed and said that he’d graduated speech therapy.
No, seriously though. He’s come a long way but is still struggling with things like pronunciation and verb tenses and sentence and word structure. She started doing some testing yesterday. It was amazing to see how far his receptive (listening) language has come. He flew through that test with all kinds of new words. Amazing how 9 months of netflix can expand your vocabulary.
The expressive language, though.. the one where he had to say what he saw in pictures. That wasn’t flying colors. And it kind of demonstrated what I have been seeing. Patrick knows words. But recalling them to say that, that is hard. It’s part of why he is always asking everyone their name.
We had a good talk about attention and ADHD and attention and steroids. His therapist said she has seen steroids really affect attention before. And that lack of attention causes trouble with memory. It all kind of fit. Not that I know what to do about it. But it fit.
So that was that. Now we just have to get insurance to agree to pay for speech therapy again.
In other big news, I got a call from Patrick’s allergist this morning. (After missing the appointment, they had him call me.) He went through the blood test and scratch test results pretty thoroughly.. figuring out what is safe to try and what wasn’t. He told me to be very careful with some newly diagnosed allergies: soy and tomato especially. And he also gave permission to try some cow’s milk with Patrick because all the tests indicate Patrick may have outgrown that allergy.
When I offered Patrick a piece of cow’s milk cheese, he was quite fearful. It took half an hour to convince him it was ok to take a small bite. He nibbled a couple more and then, after a few minutes when he saw he was still safe, he grabbed that piece of cheese and gobbled it down. No reaction. So, later in the day, I gave Patrick a piece of string cheese. He really loved that. He asked for another later on. And then he tried to get to eat only string cheese for dinner.
I nixed that plan but did try some pasta with cream of chicken soup in the recipe. Fail. He got spots on his face. No worse reaction. But too many ingredients. I can’t tell you if it was the dairy or the soy or something else. But we’ll need to be more careful before we try that again.
What a tricky balance. Introducing Patrick cautiously to foods to find out how he’ll react. And then, on the other hand, trying to make sure that he’s eating as many calories as possible.
We cut Patrick’s tube feeds in half last night. Now, he’s only getting about 200 calories over 4 hours. I think it will work. I think he can eat the target 1800-2000 calories easily. But not if I cook him dinner and discover I made him something unsafe. Tonight I ended up making a whole extra dinner for him. And yet, I still don’t think he ate his full calories.
if Patrick can maintain or gain weight, the goal is to switch to all oral food next month. Knock on wood. This wasn’t the greatest way to start today.
Today was kind of hard all around, though. And not just because my hot pad slipped and I burned my thumb cooking fish sticks. That just set me back.
But knowing that school had started. Seeing the school next door bustling with life. And everyone’s first day of school pictures on Facebook, and Patrick asking to play with friends who are no longer home. And then us.. just trying to find the right balance of work and entertainment to get us through yet another day at home. I’ve been doing this for almost 9 months now. I am exhausted. And it’s driving through the middle of nowhere and finally spotting a town and needing the restroom and then discovering that the restroom where you are is out of order and you’ll have to go across the street. Holding on those last moments when you thought you’d made it to the finish line, but the finish line moved. It’s hard.
I look around me and I see so many things that have been just waiting. Waiting for me to have time and free hands. But that’s not the time right now for me. And with needing to be a part of training, it might not even really happen for a while.
At least the day ended well. Patrick raised his start to the ceiling of the Make-a-Wish building tonight. Family and friends came. We took a tour and we ate some cake and we visited. Patrick was exhausted and crazed.
But it was a moving moment to see his star go up with the others after all. Even if he did do the fastest ever.
I’d add pictures but they are on Brian’s phone and my battery is dying so I’m going to post now.
School starts on August 19th. My goal in this month prior to school is to help Patrick work up to a school year normal.
That means a few things. First, it means restarting outpatient therapy. I took Patrick back to his occupational therapist a month ago. She was so excited to have him back and eager to start working with him on writing and an learning to manage his sensory processing disorder with a new “sensory diet.” (Since transplant, Patrick’s not nearly as controlled by his sensory seeking behaviors. But that doesn’t mean they’ve gone away. However, he’s a lot more tired so the big physical play that used to help focus wears him out fast now.)
The bad news, though, is that Primary Children’s lost a couple of therapists this summer. They have hired a bunch of new ones. But that means that the veterans are very busy with the transition. Patrick’s beloved therapist just doesn’t have time in her schedule to do the weekly therapist that Patrick seems to need right now. However, she’s been shadowed by another therapist in the couple of visits we went to. And so we transferred care, at least temporarily, to a new occupational therapist.
We also agreed to move back to the Taylorsville Clinic. (I have had some bad experiences with the office staff at that clinic and had decided not to keep going there.) Because it shares space with an instacare, Patrick has to wear a mask on the way in and can’t wait in the waiting room. However, it’s closer to home, has a bigger, cleaner gym. And we were able to basically pick our time on their lightest day.
Our first session went pretty well. His therapist picked up on all the tools we use to keep Patrick on track: a clear schedule, verbal cues, deep breathing, etc. and I think he was calmer for her than has been his usual. The other nice thing is that I think we can pull off going to therapy at 8 a.m. on Mondays to let him get ready for the week at school.
I’ve scheduled evaluations so he can restart speech and physical therapies, too. And he’ll have his last home health feeding therapy session this week.
Also, to get ready for school, we started a new neuropsychological evaluation. Patrick was SO young last time he was tested. And we know that having a healthy gut has changed a lot of things for him. His sensory processing, focus, and other quirkiness is actually a lot less since transplant, even though he’s having a hard time with sitting still, speaking quietly, and controlling his temper. It seemed like a good time to get a new look at his abilities.
So we did an intake interview and in the first few weeks of school, Patrick will be pulled out for 3 half days so I can take him for some testing. Hopefully it helps.
As I mentioned before, we’re working on a behavior plan, too, with his psychologist.. hoping to have him used to a specific set of consequences and rewards that they can use in class. He always does best in class away from me, anyway.
Transplant follow-up appointment & diet changes
We saw Patrick’s GI, Dr. J this week. It was a long appointment. For one thing, I needed Dr. J to sign all new orders for school again. It’s getting smaller each time, though. This time around was only 8 signatures and 6 pages. Compared to 20 the first year, that’s big improvement.
Patrick weighed in at 24 kilos. That’s just under 53 pounds, and up 3 pounds in the past 3 weeks. They had a new dietitian this time and she pointed out that since Patrick’s eating meats (even if they are just hot dogs, hamburgers and lunch meat) he might be eating enough protein to not need as much formula at night. Dr. J was really concerned about Patrick’s 96% BMI and rapid weight gain. He said we need to get Patrick on a regular meal and snack schedule. And he said we should consider doing less “feeding while he is unconscious.”
So, I ran this all past the dietitian in Nebraska. And she made another reduction in Patrick’s formula feeding. I’m supposed to be keeping a log of everything he eats for the next 3 days so she can evaluate what he’s getting and we can start talking about a plan for all oral eating.
I’m not sure if this means needing to add other foods to his diet. Patrick doesn’t really absorb vegetables well. (Dr. J. says they are “just wood” anyway if you don’t have a colon to break them down in.) He can’t eat fruits. So he’ll need vitamin supplements at least.
We also saw Patrick’s allergist, Dr. G, today. For years, every time we went to the allergist, he’d say that we’d need to do a whole new workup after transplant when Patrick was ready to eat. Well, Patrick seems to be more than willing to eat. And so it’s important to figure out what exactly he is allergic to. This is kind of tricky with immune suppression because the same drugs that suppress Patrick’s immune system also suppress his allergic reactions. This is good news. But it means that we don’t really know what the potential for allergies is.
So that was today’s goal. Figure out what Patrick might be allergic to. Allergist appointments are always long. Like, crazy long. We were there three and a half hours today. For an hour, we updated Patrick’s medical chart and gave history to a resident. (Which, in summer especially, is a bit like training a new resident.) And then Patrick’s allergist came in and went over possible allergens. I went through a list of things we could test for an highlighted the things I think Patrick might be allergic to. Then the doctor highlighted the things he thought from past test results Patrick might be allergic to. Plus other foods that he thought it would be good for Patrick to try to eat. We tested for just under 40 possible allergens in all. That was all that would fit on his back.
Some of the results were predictable. Cashews and pistachios, off the chart. Eggs still in a big danger zone. Oats were much higher than expected. And I highlighted peaches, oranges, and strawberries because I’ve had my suspicions. They were very surprised when some of those rare things came up positive. We had other positives for foods that rarely to never cause reactions, like tomatoes and wheat. These could be just because they are a big part of Patrick’s diet and not that he can’t safely eat them. Really, all testing done so far, we don’t know almost as much as we did going it.
Nuts, both tree nuts and peanuts, are still a HUGE no for Patrick. We are still a nut-free house, for sure. So are eggs, peaches, corn, oats. However, he tested negative for cow’s milk, which was a very big surprise. (You can outgrow milk allergies but a year ago, Patrick wasn’t anywhere close to that.)
So the next step is to do a blood test. That will test for a different type of reaction. If the negatives in the scratch test match up with negatives in the blood test, we’ll do a food challenge. (For example, offer Patrick cheese.) If positives match up with positives, then we’ll talk about a strategy to keep Patrick safe but eating as much as possible. They will not be likely to stop him from eating foods that he is currently eating without reactions. He might have become desensitized and we wouldn’t want to reverse that by taking something back out of his diet. But time and testing and trial and error will decide. And if the results conflict, meaning if one is positive and one negative, we’ll probably test again.
This is sounding confusing as I’m writing it. It doesn’t change much of what we have been doing. Just helps us try to figure out how to help Patrick eat as much as possible and keep him safe. Meanwhile, we refilled his epi and got correct dosing on his antihistimines and requested a new letter for school. And we got things started.
Patrick was a champion. It was a long appointment and he was very scared. And yet, he was very patient and helpful. He crashed in exhaustion on the way home.
Choosing a school
Enough medical updates though. I have other news. We also have been planning for school by talking to the school district. I had a meeting yesterday with a couple of district representatives (I was being transitioned from one representative to another because of some restructuring). The goal of the meeting was to finally pick a school placement for Patrick. And I did finally make a decision.
Everyone who has spent time working with Patrick: his home hospital teacher, his summer school teacher, his psychologist and group therapy leader.. they all say that he needs to be in a higher functioning self-contained classroom this year. In a regular class, he’d walk all over the teacher and never get anything done. In a low functioning class, he’d gravitate to the classroom staff and not make friends or learn to work independently. And in either, he’d get bored and then get naughty.
But, as I’ve written before, I was uncomfortable with the classroom that he’d go to by default because of our address. Well, a little over a week ago I got brave enough to ask if there were any other classrooms like that one in other schools. Since, after all, I drive Patrick to school anyway.
It turns out, there are several. And the closest to my home happens to be in the town where I grew up. Across the street from my grandpa’s house. And 5 minutes away from Patrick’s therapy office.
All of a sudden, things seemed to fall into place. The class is indoors. It has fewer students. The teacher has a pretty good reputation. And, even though it’s far from home, that family connection will make it feel like Patrick isn’t going to school far away. It isn’t farther from the other school. And it’s in a place I know. I know the neighborhood. If he made friends and wanted to play after school, I could do that. Grandparents, aunts and uncles all live nearby to help respond when he’s sick. Patrick could even, in theory, choose to walk to his grandpa’s instead of me picking him up. Eventually. Once we’re sure he will actually go there when given a chance.
The district folks seemed to think they’d even be open and excited to have me volunteer in the school. (They have a high hispanic population. It sounds like I can use my talents to help.)
I’m a nervous wreck still. All of a sudden being away from Patrick from 9 to 3:45 every day after all this time together sounds terrifying. I wonder if he’ll make friends. I worry because I don’t know ANY of the staff here. Losing my district rep means that EVERYONE will be brand new to me. And I don’t know what writing an IEP and trying to request accommodations is going to be like. And I’m coming in with a very long wish list that I expect them to take care of.
Also, unlike some other places I’ve looked at… this is a very normal school. No big special needs programs. Just two small little special needs units.
And – I still have to make plans for safe lunch AND breakfast in the classroom. Though with only a handful of students, that should be more doable.
To make things worse, I didn’t bother looking up a school calendar until last week. Our district starts the same week of the year every year and I made plans for that. Only THIS YEAR they decided to change things and start a week early. Which means that instead of having a full week to make plans with a new school like I thought, I’ll have just 2 days. 2 days! To give medical training. To make an allergy plan. To make a behavior plan. To orient a whole new team to our family.
As usual, summer has been very busy. Brian survived the Youth Conference pioneer trek (they did a one week recreation of the handcart pioneers that helped to settle Utah). Getting last details like their trek booklets and video slideshow kind of ate up all of my attention before and after. And Brian was swamped with getting everything ready both to prepare and clean up from trek, as well as getting work responsibilities squared away. Of course, this coincided with my amazing respite provider being sick for two weeks in a row and I barely held it together, honestly.
As a nice treat, though, my sister came and helped Patrick to bed one night so that I could drive up and visit my husband on the trail. That was a little bit of payoff, despite all of the craziness. Brian was called on to speak to the youth that night. He talked about the women’s pull, when the boys and men leave the carts and the women pull them up the steepest part of the trail in memory of the many pioneer women who crossed the plains without husband because they were divided by circumstance or death. As he talked, I saw a little bit of how it must be for him to watch me struggle right now with my current demands. How helpless he must feel watching me. I’ve been so focused on my own battle that I haven’t really seen things through his eyes that way before.
While Brian was away for youth conference, we celebrated Patrick’s “miracle day.” The 6 year anniversary of when Patrick, basically, died in my arms.. but didn’t leave us. I am still in awe of where we are now considering what happened then. I decided that I’d just scrap all responsibility that day and just focus on Patrick that day. It was swimming day at school, which means I got to go play in the pool. We left there and went out to Arby’s for lunch. (Arby’s has generously donated summer lunches to kids this year and so Patrick and I have been regulars this year.) While there, I asked Patrick what he’d like to do to celebrate and he chose the zoo. And, as we finished at the zoo, I decided to go follow a lead from the morning. The lifeguard at the school pool overheard me saying how hard it is for a transplant patient to find a pool clean enough to swim in. He gave me suggestions of a therapy pool that might be willing to sneak us in during a water aerobics class for a private swim session. In the end, that’s exactly what happened and Patrick and I enjoyed a full hour of having the shallow end all to ourselves. We came home exhausted, ate a quick dinner, and then went to bed early. A perfect way to spend the day.
Patrick’s last day of summer school was a week later and that’s why you haven’t heard much from me. I can’t quite put into words what it is to spend all day every day trying to supervise, teach, potty train, clean up after, and keep nurturing a little boy with this many needs day in and day out.
I’m trying to make the best of summer and shake the guilt of the mom who formerly had amazing mommy school themes planned for every day but now just makes it through the day. Patrick gets up at 6:34 every day. We go immediately to the bath. Patrick’s discovered laying down in the tub and so he has decided to learn to wash his own hair. This means that I can’t just put him in the tub and do things until I’m ready to get him out. He takes care of himself and gets out. Most often. Sometimes I catch him with dry hair and have to send him back to wash it.
We sometimes take lazy mornings where the only goal is making sure he makes it to the potty every time he needs to and that he eats a good breakfast. (He’s discovered cereal now with soy milk and that’s leading to better breakfasts.) Some days, we take some time for playing and learning. I let mommy school slide for a bit and it certainly isn’t organized and awesome, but Patrick started to miss his schoolwork about a week into this stretch of summer break and started to get out his writing books and practicing his letters every day, or grabbing his sight word readers and practicing with me.
Potty training is going well. Patrick has had several all underwear days, even using the bathroom away from home. But sometimes he forgets and sometimes he gets stage fright.
He’ll get restless midday and so we take lunches at the park. We gave up on the location by our house because there were never kids his age there. We now bounce around between different parks, going most often to the one near our home with a shaded play structure. It’s nice to give him the chance to move and interact with other kids. And we’re pretty used to eating the lunches I pack now. Of course, Patrick’s gotten a bit fixated on corn dogs in vegan ranch dressing and picks that most often. But build your own pizza kits, hot dogs, pasta salad, chicken nuggets, and hummus are regular favorites.
A lot of our time is also spent practicing time outs, too. Patrick’s been angry again lately. I talked to his psychologist about it and she pointed out that he’s got a lot of new skills (language, potty, eating) and a lot of new independence now that he doesn’t need feeding tubes. And she thinks that he’s trying to figure out his boundaries again. So we worked out a behavior plan with 3 very careful worded warnings and then consequences when he’s out of control in time out.
I tried starting this behavior plan on the Pioneer Day weekend and it made for a very LONG weekend as Patrick fought back against the new rules and consequences. I don’t think we’ve got things quite right yet.
Just when we were making ground, he caught a cold. Amazingly, it only lasted a few days and went away without many problems. But we had to start all over again once he was better.
We’ve also been continuing to go to social skills group at the autism clinic and Patrick’s attention seems to be getting better the more we go. Plus, I get a pretty fun little show watching a bunch of autistic 4-7 year olds practice circle time and social skills through a two-sided mirror. I’m the old-pro parent there with a bunch of brand new, doe-eyed new parents who are terrified of the diagnosis. I just sit there knowingly, quietly watching. They see behaviors that are confusing and scary to them. I just see autism and know that with a little practice and help, that won’t be a big deal. I know there is a lot more parents can survive and learn to do than they realize, and much more potential in children, too. I also see how Patrick doesn’t act exactly like the other kids in the group and remember why I don’t often use that label to try to explain his needs. But the group helps, regardless, and provides some entertainment for me, too. Especially when the kids come play with their reflections.
With a little bit more time back, we’ve snagged some family time this July. We got our bikes in good riding condition and went to the Jordan River Parkway. I went once. Brian has been taking Patrick back. Brian and I even squeezed in a couple of dates. We went to a movie last night and realized that we aren’t ready for that much leisure time yet. It just felt wasteful to sit in a theater doing nothing and we couldn’t quite comprehend people having time to be regular movie goers. (Not that it’s wrong. Feeling like leisure activities are frivolous is a pretty common side effect of the kind of extreme trials we’ve faces this year.) We also took a morning and went out to breakfast and to the driving range. That didn’t feel quite as frivolous and it was fun to see all those skills we learned in golf lessons coming back. I’ve lost less than I expected. We went to the zoo a few times. Brian had a company party at Boondocks so we went drove go carts, played bumper boats and arcade games, and introduced Patrick to bowling. With a ramp and bumpers, he actually did pretty good at it. Especially in a total overstimulating environment and with a cold.
That’s the long and short version of most of July in a nutshell. I think I’m gonna wrap up this sort of travel log sort of blog post right now. There are some other big things that happened in the past couple of weeks, but I think they deserve a post of their own.