Category Archives: Emily

Dear Laura

This morning, I got a concerned Facebook message from a woman I’ve never met, but who knows one of my friends and apparently has been following this blog. I haven’t been writing. She was concerned.

To all of you, friends, acquaintances, and family, especially those who have relied on this blog for updates.. can I say I’m sorry? This has been a growing year for me personally and I haven’t been writing because I’ve been busy with a lot of things.

Proof we are still alive.

The short version is this (and I really need to devote a post to this topic)… I went to a doctor in December and learned that 8 years of full-time caregiving and saying “I can’t take more care of myself. I’m taking care of my family” kind of all came together into one disaster for my health. I discovered I had high blood pressure, overweight, out of shape, one seriously messed up knee, and was borderline prediabetic.

This may sound like bad news, but really, for a long time I put myself last. And this was just the nudge I needed to recognize that if I wanted to continue to be the kind of mom I wanted to be, some things needed to change. So I started working with doctors and a physical therapist. I got a gym membership. I started tracking what I ate. I got started meds for blood pressure. I pushed for asthma testing, got diagnosed, and started taking medications to bring that and allergies in control. I discovered kinesiology tape tape. I kept up with regular counseling because this was a serious blow to my ego and I had a month where I tangoed a bit with anxiety and depression. I gave myself tennis elbow. And tendonitis in several other ways as well. I adopted the motto “Pain is temporary. Quitting is forever.”

And after a fair amount of time and effort, I’m happy to say that I’m making some progress. I’ve lost some weight (more still to go) and kept it off. Most of those health issues are considered well managed. I’ve been hiking and biking and swimming and playing on the trampoline with my family in ways I haven’t been able to in a very long time.

But learning to take better care of myself has been a learning curve and it often didn’t leave me much other time.

Meanwhile, though… life went on. And in the short version, here are a few of the highlights.

In spring:

We went to Disneyland. Because we are seriously addicted. It was spring break and far too busy and I’m not sure I’ll ever choose to go during spring break again. Highlight of the trip for Patrick was meeting Doc McStuffins. Though he pointed out to us that she was too big. And couldn’t talk. Highlights for the grownups: We went on a foodie adventure and tried several secret menu options. Mac and Cheese in a breadbowl proved too big for any of us to eat. But the cinnamon roll at the Starbucks inside of California Adventure was delightful! And the World of Color Dessert Party was more than worth it.

We tagged along with Daddy on a business trip to St. George. We surprised Patrick by taking him to visit Pioneer Park, a state park full of Utah’s trademark red rock formations. He was upset the park didn’t have a playground. Then he surprised us by absolutely loving climbing the rocks.

We discovered and signed Patrick up for an adaptive baseball team. In adaptive baseball everyone fields, hits and runs. You can use a tee or they’ll pitch to you until you hit the ball. There are no strikes. There are no outs. You play at least 2 innings per team. More if you’re having fun. Or you can quit early if everyone is cold or tired. Everyone cheers for everyone. It is, perhaps, my favorite form of baseball ever. Patrick loved his uniform and his coaches and his teammates. He hated fielding, but kind of liked tracing letters in the dirt. He tried to learn to throw the ball in fancy ways and ended up with a crazy windup the always landed the ball behind him. He got a little bit better at hitting off the tee. And then, like nothing.. the season was over. We had a great time. And will certainly be back next year.

Patrick wrapped up 2nd grade with a fair amount of success… stronger in reading and finally making progress in math. He had an amazing 1:1 para for the 2nd half of the year when his previous aide got promoted. She brought out the best in him for sure.

In summer:

The bishop went on vacation for a month, leaving Brian in charge. That was a fun adventure. Patrick helped housesit there and also for another neighbor.. and we learned that he is a REALLY good housesitter. He’s not quite tall enough to get all the mail from the mailbox. And he isn’t strong enough to pull a hose around. But…He NEVER forgets that we need to pick up the mail or water the lawn. And he’s not afraid to ask for help. He earned a little bit of money doing it and used it to buy some toy cars and a fidget spinner.

Our ABA provider completely and totally screwed us up. We’d assumed that Patrick could get into their treatment center for summer services, then were told he couldn’t, then were told he could. And then, after a lot of back and forth and spotty service for the first month of summer, finally provided us with the right medical forms. Only to read them over and decide they didn’t want that liability. So I ended up with a lot of unexpected 1 on 1 time with Patrick. We got a museum pass and did our usual tour of museums and zoos, etc. We played with kiwi crates. We worked in dollar store workbooks. We practiced some educational computer games a lot. We got through, but it was a pretty messy and disorganized start.

I signed Patrick up for adaptive swim lessons. With no central line, this is now a possibility, and Patrick really needed somewhere to go and some help with his fear of water. His mom really needed a way to keep exercising and a minute of respite. Thankfully, he had an amazing teacher who was totally fine with me swimming laps while she taught him. And he got brave enough by the end of the summer to float, dunk his head under the water, blow bubbles.. and he was working on learning how to move his arms to swim.

Also, as a summer highlight… we bought a pass to the local amusement park, Lagoon, and Patrick and I spent several days up there over the summer. They would totally burn him out. We’d leave with him starving. He’d down an entire Arby’s kids meal on the drive home and then fall asleep for hours. He loves the rollercoaster, the small ones. He loved riding kid rides without me. He loves bumper cars. Or any cars really.

Our motto of the summer was “I can do it myself” and Patrick did make some great progress in learning to heat up simple foods in the microwave, get the mail, water the lawn, play in the neighborhood, fold his own laundry, clean up after himself, write more neatly and on and on. He grew a lot!

Oh, and one other summer highlight. Thanks to our awesome respite provider who is a teacher and had extra time because it was summer, Brian and I took a weekend getaway to San Diego. Just because. We slept in every morning. Played tourist and foodies. Even pulled of tickets to a baseball game. 3rd row on the 3rd base line.

And then, in fall:

Patrick survived his first overnight camping trip. There was some ice, but officially we didn’t hit freezing.

Patrick started 3rd grade. He’s now the old kid in his class. I think the 2nd oldest by 3 days, if I remember right. They had a bunch of 1st graders start this year. Half the class is tiny. Half the class is big like Patrick. He’s not used to being the big kid and the first couple of weeks he would just reach a breaking point shortly after school, yell, throw, and then collapse in tears at the frustration of having to hold it together and watch out for the little ones.

First Day of 3rd grade

His amazing aide got a great job offer a week before school started. That didn’t really help things. The first week, I tagged along and helped at lunch at the school. (And especially the first day when they had a class full of brand new kids and an eclipse viewing party to try to pull off safely.) By the 2nd week ,they had hired a new aide. And she’s really been kind of amazing for him. She’s older that his other paras have been. Which is kind of nice in that she’s not as afraid of getting in trouble for advocating for him. She’s really been quite kind and attentive and helpful. And she has really taken to the task of helping his eating. She asked for a menu of what he could purchase at lunch and has him buying and eating boxed ham and turkey sandwiches on wheat bread. He ate a whole banana for him a couple of days ago! This is perfectly timed as a summer of swimming caused some weight loss and the dietitian wasn’t exactly happy with me for it.

Also, I started a new role as PTA treasurer. This has been a much bigger and busier job than I imagined. But it’s also been good for me in a new world of not always putting myself last. I mentioned to Patrick’s teacher that I used to do bookkeeping. She looked at me and and said, “You used to do a lot of things.” And she’s right. I did. I had a lot of years single and then more years married without kids. And I did a lot of things. Now that Patrick’s health is better, it’s fun to be doing some of those things again.

A favorite way to spend an afternoon. Lining up cars & watching TV

I’ve kind of dived in full-time as a volunteer. PTA (which is settling down now that we are past the start of the year a little.) Still volunteering with reading groups. Primary music in the children’s sunday school at church. And in this past month, I’ve been asked to be Patrick’s cub scout leader. That’s another thing that happened this fall. Patrick earned his wolf rank. So he moved into the bear den a month early with me. We’ve done neighborhood cleanup with garden tools, woodworking, and pocket knives so far. Wednesdays are crazy. But I love being a scout.

Patrick’s settling in at school. Reading 100 words a minute. That’s not counting the random words he’s picked up from his scripture study. Like abominations (pronounced “abominable nations” by him.)

I threw a fit and got all new ABA providers and that has helped a great deal. I feel like he’s making progress on most of our goals there.  He wrapped up an OT session and is diving into PT again with focus on learning how to throw, catch, bounce and dribble a ball. So far, his schoolwork is almost all review and far too easy. And he’s really becoming quite grown up and and helpful around home. I love hearing his thoughts.

Anxiety has been bad for him of late. He started stuttering over the summer when he’s nervous about what he’s saying. So far everyone tells me not to worry and he’ll outgrow it. His fear of rims without hubcaps has reached a peak and I sometimes have a hard time helping him be brave enough to walk past school buses at the end of the day.

I’m hoping it’s just the start of school and the difficult memories fall weather can bring.

We’re headed for his 3rd annual post-transplant checkup in a few weeks and I’ll try to update on that soon.

And in the meantime… well of course we had to go back to Disneyland last week. This time’s highlight? Brian went to Disney Institute, a leadership training workshop.. for work. We got to stay in the Grand California hotel. Which mean walking out of our hotel straight into either downtown Disney or California Adventure. It was a treat to just return to the room if we forgot something or were tired. Also, as Patrick just discovered a love for the Toy Story movies, and since Brian was travelling ahead, we sent a Buzz and a Woody doll ahead with daddy that were waiting in the room when we arrived. Patrick had a happy little Toy Story binge in Disneyland.

Patrick has entered a new phase for rides. While he still loves his roller coasters and the Small World.. he also discovered the storybook rides. Peter Pan. Mr Toad’s Wild Ride. Pinocchio. That he couldn’t stand before. We discovered this at the end of our last day, alas. But it means some different experiences next time I’m sure. Also of note, we made him ride Splash Mountain. (He loves the log flume at the park near home.) That was a little scary. But we all survived.

Anyway, dear Laura… and our other family, friends and followers who have wondered where we went this past year and what we were doing.. that is what is happening. I haven’t been this busy since before we adopted Patrick. I’m not used to it. I’m used to surviving and being trapped in a hospital or at home by health issues. I’m not used to meeting deadlines and being places when I promise. I’m used to having to always cancel plans, not making and keeping them.

Hopefully I’ll get better at this with time. But for now, just know that we are ok. And if I’m not finding time to sit down and write, it means that we’re not quarantined, not in a waiting room, not hospitalized. We’re out and living. And we’re not very efficient at it yet.

Mrs. Hoopes Goes to Washington

**Disclaimer: I know you all want to read about our much bigger news. However, I had this post all but written before I got busy with Halloween and birthday planning last week. So, I figured I might as well finish it up and hit post. I promise I am following tonight with other news, too.
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Our family did something that, for us, was completely upside down last week. I went on a trip. And I left Patrick home with his Dad. I recognize that this is not unusual in the world we live in. However, it is incredibly unusual for the primary caregiver of a home infusion patient to travel without them is very unusual.

Let’s start by saying that we survived. In fact, I think it was good for all of us.

A few months ago, I was invited to attend a research panel on the subject of lost Central Line Access. This came through a doctor who I had e-mailed a few times because of my support group and later because of the troubles we have had in placing a line in Patrick.

At first, the idea seemed a bit crazy. But the more I thought about it, the more important it sounded. Here a group of experts was gathering to help try to figure out how to research and solve the exact problem that is putting my son’s life in jeopardy. Why wouldn’t I take the chance to go meet them and contribute to the discussion.

Well, why, except that we’d have to pay my way and have Brian take time off to fill in with me while I was away. As we discussed it, we decided it was a really good idea for me to try to go. (Brian also thought the break would be good for me.)

So, last Sunday I snuck out of church early and headed to the airport. I got picked for expedited screening at the airport and made it to my gate in under 30 minutes. Then I looked around and thought “Well, how what am I supposed to do with myself?” Remember that usually when I fly, we spend something around half an hour in security alone, and then we have to repack bags, change a diaper, gate check our stroller, and make arrangements for early boarding. Oh, entertain a very active child while keeping his IV tubing safe.

That Sunday was one of the longest and quietest in my memory. I read books, watched movies, played video games, sent e-mails, checked on Facebook, worked on a birthday video and still had time to spare. I finally made it to my room, called home, and then went to bed a little after midnight.

Morning seemed to come too early, but without anyone else to get ready, I was still dressed and ready with time to kill.

The panel itself was amazing. I tried taking notes, decided writing was too slow, switched to a computer and filled 12 pages. I learned so much about what might cause patients to lose central line access. I am itching for this panel to bring forth fruit in the form of better understanding of how to keep patients from losing central line access quickly the way that Patrick did. I can’t go into details about the research plan that was decided upon.. but I can say that it is a huge but simple step that could lead to so much better understanding, and with better understanding comes better care.

It was also an amazing experience to be in a room filled with these brilliant medical minds. I got to sit with and get to know better many of the people responsible for designing and manufacturing central lines. I came home with a stack of business cards and am already working on hopefully becoming a little bit more of a patient advocate in this area.

And then, when the conference ended, I took a cab into Washington D.C. I spent the evening and morning playing tourist. (Only getting myself lost a couple of times and never irreversibly) before time to come home.

On the flight home, I sat next to a talkative man who had been all over the world. We compared travels and experiences and opinions. When we landed, another man asked me what my career was that allowed me to be so well traveled. When I told him I was a stay at home mom of a special needs child his jaw about hit the floor. For some reason, that gave me a bit of an ego boost. I think I sometimes feel like I disappear a bit in this important but unlauded role.

Being away from Patrick and Brian was an eye opening experience. I think it was for them as well. I think we all like our roles. (Though, I’ll admit, it was hard to come back home and dive right in.) I think we can go several more years before sending Mom away on another big trip. But it was really fun to stretch my wings and remember what it’s like to be just me for a while.

 

The Orange Rhino Challenge and a whole lot of stars

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Patrick loves school! He is so happy to be back. He is making new friends at a record pace, as well as happily meeting and playing with his old friends before and after school.

But, he’s also been really struggling since school started. At first, the reports were a few here and there coming from the classroom. Then one day, the special education came out to meet me and talk about the problem. Patrick has been growing increasingly aggressive. He’s not picking fights per say, but when he gets mad or feels ignored, he has been using his hands and feet to express his anger. And it’s been getting worse, spilling over into therapy and playdates and church and home.

I loved the conversation with the special ed teacher. (Note, this isn’t the regular classroom teacher. This is a teacher who visits the class a few times a week and, like everyone else, is new this year.) She said she’d heard that Patrick hadn’t had these problems last year in school and asked me if he’d been under any stress at home. I explained that during the first week of school, Patrick had had major, life-threatening medical issues and had needed to travel out of state for surgery. She said, “Well, I know about that. But other than that….” Yeah. She didn’t get it.

Then she asked me what helps at home. I tried to explain sensory processing disorder and how he needs a physical outlet for his energy or he can’t sit still, gets in trouble, gets embarrassed, gets mad, and hits. She told me he gets a regular sensory time once a day. Yeah. She didn’t get that either.

I left the conversation with two clear impressions. 1) Patrick was struggling at school and 2) I was going to need to come up with some answers to help him and/or a better way to communicate with the plan-makers at school because we weren’t going to make much progress otherwise.

I put a lot of thinking and reading and talking and praying into the problem over the next couple of weeks. And I watched as things got worse and worse. It was pretty clear to me that Patrick has been responding to the stress of having his life turned completely upside down… and then having to start school. Not only that, but school twice as many days a week as usual, and in a class that is much younger and more chaotic than last year. He’s feeling overwhelmed and he doesn’t have the words to express his feelings or stand up for himself. So, he’s doing the only thing he can figure out to do. He’s fighting back physically.

And then I remembered something I encountered a while back. An amazing woman who made a goal not to yell at her kids for a whole year, 365 days..  She blogged about the experience and is still blogging and running a Facebook support group to help other parent learn to discipline without yelling, too.

She calls the project The Orange Rhino challenge.

And I realized that I can’t expect Patrick to learn to deal with and express his anger and frustration and overall exhaustion with his situation in healthy ways if I haven’t learned to control my own temper.

But I just couldn’t seem to get there.

And then, a few days ago, I took Patrick to a checkup with his neurologist. We discussed the results of his recent neuropsychological evaluation (a topic that I swear one day I’ll tell you more about, but in a nutshell Patrick was diagnosed with several learning challenges, as well as ADHD) and how to help him learn to work through his attention issues at school, and he offered to have me talk to the department social worker about resources.

That conversation was a lot about how to create a behavioral plan in Patrick’s upcoming IEP. But one thing that stood out was that he suggested using a reward system to encourage the behavior we wanted instead of just punishing “naughty” behavior.

And I just couldn’t get the thought out of my head. Finally, it came to me. And yesterday, Patrick and I had a talk and made a deal. We both need to learn to be gentle when we feel angry. So, any time one of us is going through a hard time and feels mad and chooses to use soft hands and soft words instead, we get a sticker.

I stuck a sheet of foil star stickers in my pocket and away we went.

It was a rough start, with a tantrum first thing in the morning when he failed to earn a sticker by hitting when he didn’t want to take a bath. I thought maybe I was in over my head. But soon, we had our groove.

I took him to school with 3 stars on his head, gave a sheet of stickers to his teachers, and hoped for the best. I picked him up after school to find a dozen more stickers on his head. He was so proud of himself! His teachers reported an improvement, too.

So why am I telling you all this? Well, part of the plan of success with the Orange Rhino challenge is to tell people what you’re doing so that, if you’re feeling weak, you can call out for help. I’m two days in… we’ve had a few almost tantrums from both of us, but we’ve made it so far. It’s easier because we’re doing it together.

My goal isn’t necessarily a year of no yelling. But it is to earn as many sparkly star stickers as I possibly can each and every day.

To know more about the Orange Rhino Challenge, here’s a website: http://theorangerhino.com/

 

 

In the midst of miracles

This morning as I was laying in bed trying to convince my tired body to get out of bed to greet a happy 7 a.m. Patrick, I was contemplating on just how far my  munchkin has come. And all of a sudden I realized that I am living in the midst of miracles right now.

I am a VERY tired mother right now. By about 5 p.m. every day I just want to call it quits and go to bed because the work of taking care of a TPN-dependent, developmentally delayed toddler is exhausting! Patrick is a very active little boy right now. He’s on the brink of walking. He’s finally mastered the skills of carrying things from one room to another, of opening drawers and doors and emptying the contents found therein, and of putting things in places where I sometimes never find them again.

He’s bordering on two with the fully independent attitude that comes with that age – while simultaneously he’s finally getting the strength in his body to explore his world in ways he never has before. My good-natured patient boy has discovered tantrums. And he’s not afraid to use them to tell me when he doesn’t approve of me stopping some unintentionally self-destructive activity.

And, if the exploration weren’t dangerous enough, try attaching IV tubing to this strong-willed child! Even with a 10-foot extension, he manages to get himself wrapped in and around furniture. He knows no limits! If I leave a baby gate open for even a few minutes, you’ll find him at the top of the stairs grinning, waiting to run from me the second I come to catch him before he reaches the end of his line and gets yanked back down.

And this morning as I lay procrastinating getting out of bed I realized just what a miracle my total exhaustion is! This time last year, we’d just come home from the hospital. Patrick was thin and frail, not even able to roll over. Our current battles in physical therapy show that there should have been much more major consequences of his illness and arrest last summer. No one who hears his history ever expects to find normal looking boy smiling up at them.

But right now Patrick has been blessed with exactly what I’ve always wished for him… The strength of both body and spirit to not know boundaries. He may still be limited, but he doesn’t feel limited.

I take it for granted sometimes because they’ve been so common in our lives. But Patrick, Brian and I live in the midst of miracles each and every day. And we do so with full expectation that more miracles lie ahead.

“For behold, I am God; and I am a God of miracles; and I will show unto the world that I am the same yesterday, today and forever” 2 Nephi 27

Home again

I just wanted to take a minute to let you all know that Patrick and I made it home safely Saturday evening. The flight was a bit late and very full, but overall the trip went very smoothly. Patrick and I even got the opportunity to ride home next to a very kind woman. She and her husband are considering adopting and I got to spend the whole flight talking up adoption, especially special needs adoption. Patrick liked her, too, and even spent some time playing and cuddling with her during the flight.

We’re all pretty tired. Patrick and I both still have pretty bad coughs. Fortunately, Brian’s healthy.. but has been struggling to make up for the time he took off at work. On top of that, they scheduled a power outage last night. He ended up spending the whole night working to get servers back online.

On a different, and happy note, Brian and I celebrated our 6th wedding anniversary yesterday. With all that we’ve been through this week, it was a pretty simple celebration. My parents took Patrick for a couple of hours and we went to dinner and our first movie in well over a year.

It’s funny how life changes change perspective. Our anniversary was very low-key, yet I found myself overflowingly grateful to have the kind of marriage that doesn’t need a lot of frills to be happy. I love my husband more today than the day I married him.

Adoption Reflections: Getting to know you

I left off my story the night before Brian & I flew to Michigan.

Saturday morning, Brian and I got up before the sun. We went shopping for a few more baby things and for some presents for Patrick’s birth family. Then we went to the airport.

It was so strange waiting in line with a carseat, but no baby. In fact, the sight of us juggling so much luggage and an empty carseat drew some attention. A very kind man ended up helping me in line while Brian was off getting some money at the ATM. We were talking about our reasons for flying. He was taking equipment to Africa where he was going to teach people in 3rd world areas to build and maintain wells. When I explained why we were flying, he was in awe. It was very strange to meet this great humanitarian and have him be impressed with what I was doing.

We were flying standby, so Brian ended up about 10 rows behind me. I remember hearing him telling other passengers why we were flying and thinking “This is all so surreal.”

The amazing thing was, for all I was nervous, it was also all so peaceful. I’ll always remember how beautiful the fall leaves were on the trees as we landed.. and how right everything felt.

It was evening before we got to our hotel room, and then to the hospital.

We arrived and explained why we were there and were shown to a family waiting room. Where we waited, and waited, and waited. Finally, we met Patrick’s birth family… his mother, grandmother and aunt. Our timing couldn’t have been worse. We ended up arriving in the middle of a family crisis. But they amazed us with the grace and kindness they showed us.

We talked to the head of the NICU and to Patrick’s family for a while…learned more about his medical needs, and then finally got to meet Patrick.

I remember thinking that he was SO tiny! Just this fragile little ball of baby, with a head full of black hair. I got to hold him that night and was just amazed by him. We also got to know his birthmother and her family a little bit.

Soothed by my paci

We went back to our hotel a bit overwhelmed and not sure what to do. We were overwhelmed by how much of his medical status we hadn’t known… and by the whole situation in general.

But, we’d made a committment to give Patrick a day, and so the next day we went back to the hospital. We explained to the nurse that we’d like to learn all we could about caring for Patrick, and she was wonderful about giving us that chance. She taught us to change his diapers (around tubes). And she let us hold him.

Brian and I each got some time alone with him that day. I remember holding and rocking him and singing to him the words of a children’s song:

“I am a child of God,
and He has sent me here,
has given me an earthly home
with parents kind and dear.”

And my heart broke at the idea that Patrick didn’t yet know where his earthly home and parents were. And I didn’t know if I was able to provide that for him or not.

As the evening wore on, the head of the adoption agency finally came. She’d gotten word that no one from the agency had really acknowledged our arrival. She explained to us Michigan’s adoption laws, and what she knew of Patrick, his medical needs, and his birth family.

While she was there, two elders from our church arrived… courtesy Patrick’s grandma. (I’ll forever be indebted to her for sending them). They came to bring us the sacrament, and while they were there gave us priesthood blessings of comfort.

We visited with the adoption supervisor for hours, and then went back and spent a bit more time with Patrick. Then we went back to our hotel.

That night, as we were sorting through the dozens of pictures we’d taken that day, one jumped out at me. I looked at it and just KNEW that I loved this baby! And that I wanted him to be my son.

First days

Monday morning, we went back to the hospital. Finally people were there! We met more doctors, the hospital social worker, and the care manager who’d help us to get Patrick home. Calls were made to Primary Children’s to see if the doctors in Utah could take care of Patrick. His surgeons came and talked to us about Short Gut and transplantation. Finally we felt like we were getting a grasp on this situation, and amazingly, we felt like it might be something we could do.

Then we had the big decision to make. The night before, the woman from the adoption agency had explained that the papers we’d signed in Utah would expire if they weren’t filed on Monday. Besides, Brian had to fly back to Utah that afternoon for a conference at work. We had to make a decision before he left for the airport about whether or not we were adopting Patrick.

We held a “family conference” that morning… Just Brian, Patrick and I. We talked about the decision we were facing… and the fact that we felt ready to move forward. Then Brian turned to Patrick and asked him if he’d like to join our family.

He had been sleeping, but he opened his eyes and kind of looked at Brian, as if sizing him up. Then settled back down to sleep in his arms, as if totally content. We took that as a yes.

We asked our nurse to take our first family picture.

At 1, Patrick’s social worker from the adoption agency and the hospital social worker met with us. We didn’t have much time, so we signed papers in a hurry. Then we left to take Brian to the airport.

And that was it… Brian kissed me goodbye at the curb and said “Take care of our son.” We had a son! One with far more troubles ahead that we could imagine… but one who also just filled every room he was in with the feeling of peace and joy.

We’ve never looked back. Patrick is our little boy and we love him with all our hearts!

Through Grandma’s eyes

I have so far resisted the impulse to write and to let Emily handle all the blogging. But after reading her most recent post about the beginning of this journey, I feel like adding some of my own thoughts.

It is difficult for a mother of seven to see her daughters struggle with infertility. I always have a prayer in my heart for them to be able to experience the joy that I feel as a mother and grandmother.

When Emily and Brian came to us with the story of the little baby born in Michigan that might not have a long life, I had such mixed feelings. I wanted them to have this little guy in their lives, but didn’t want them to have to suffer any more sorrow. There were so many unknowns. I can’t tell you why I fell so instantly in love with that little 2 x 2 inch digital image, but I did, and hoped that things would work out.

I don’t want to jump ahead too much from Emily’s story…but the best part of November last year for me was that I got to go to Michigan and meet Patrick myself. Brian had to come back to Utah and complete a project at work. Thankfully, we have access to Delta Buddy passes and I was able to fly out and stay with Emily for the week he was gone.

She picked me up at the airport and I don’t remember if we went to the hotel first, but we were at the hospital in no time. We had to check in at a secure desk and then off to wash. This was an event in and of itself. Roll up your sleeves, take off your jewelry, look at the clock and then begin to scrub and not just for a few seconds, it took several minutes.

Then through a maze of sorts (took me a couple of days to figure it all out) and we were in Patrick’s room. The lights were dim and there he was…big brown eyes and lots and lots of dark hair. He was so tiny. Just over 5 lbs. His tiny head fit easily into just the palm of my hand. Holding him was no effort at all, except that he had leads and tubes that connected him to life-saving and monitoring equipment.

The next few days were spent mostly at the hospital. We spent very little time in the hotel, just enough to heat up some food (can’t cook everything in the microwave believe it or not) and send home the many, many pictures that we were taking to keep Brian up-to-date. We had time to attend a Sacrament Meeting and catch some people at the Detroit Temple and ask them to place him name on the roll there. But we made sure that we were there for rounds morning and night as much as possible. Every day there were new things to learn about Patrick’s condition.

Emily was swamped with the details of the adoption, the insurance, medical decisions, travel plans and keeping family back home in the loop. Because she had phone calls to make, I got to hold Patrick for many, many hours. He isn’t able to have much by mouth and the instinct to comfort a crying baby with a bottle or breast just wasn’t an option. We quickly learned the value of a “paci”.

The nurses there are amazing. They are caring and skilled. They seemed to have an instinct for being available but not in the way. I felt comfortable enough to sing him and tell him stories and I know Emily did, too. And I know that when we weren’t there, they were holding him and loving him just like we did.

I will forever treasure that special week getting to know this grandson. I am grateful for the self-less decision that Brian and Emily made to bring him into our family. They are amazing, completely prepared by the Lord for their role as Patrick’s parents.