Jason Mark - His First Few Weeks

This is the story of our Jason’s first few weeks of life. It’s long –and I actually didn’t really write for all of you readers – sorry. J It’s more because I needed to go through my feelings, my heart, of what happened and how I’m still working through this whole process of having a special needs son.

I do want to say this and please hear me: Down Syndrome is not "the worst". Our whole experience so far is not the worst situation. There are way more challenges out there that we were not given, at least at this point. Even in the whole Down Syndrome spectrum, he has been spared so much thus far medically speaking. So please don’t read this and either have a pity party for me, or react far the other way and think “they’ve has no idea of what hard is” …ha-ha… well, everyone has a story. And while this is ours, you may have been given something that we could consider hard. So, read this very long post if you want, or skip it....(but you’ll miss lots of cute pictures if you do!).

Every was different than I thought it would be.

Except for active labor; it was like 2 or less hours. That seemed normal to me. Very strange contractions though, and all of sudden, our baby was born at 2 a.m. right on the due date! July 29th. James whispered to me that this baby was a BOY. Seemed like too good to be true! (Excited about whatever gender God was giving us –but having a brother for Erik was pretty neat!) 

The midwives noticed his breathing was really fast, but gave us about 30 min to enjoy him and they also did their routine checks. We looked him over – and I remarked that he looked different than the others – but just in a state of euphoria that this whole hard pregnancy-and-the-dreaded-labor was over- moved that thought away. He didn’t score as high on the APGAR test – and I’m thinking “but my kids all score high on that…what’s up?” then the midwives advised us that we will have to go to the hospital for his breathing -but left us alone for a few minutes. (me thinking – that’s nice, they just want to give us some “family time” -yet wondering why they’re going out of the room, because we usually just chat around the bed for an hour after this amazing miracle of life arrives… And I’m thinking and hoping that his breathing will calm down and it will be all good, and we won’t have to go to the hospital.

But we do, they say – so James runs and gets the car seat from Mom and Dad’s place where Leanne was staying @ 2:30 in the morning– and I start getting ready… wondering why the midwives weren’t helping me around like they normally do. I shakily try to gather some things after just gone through labor minutes earlier. Later I realized that the midwives were probably nervous on what they were going to have tell us next, and trying so hard to get a hold of the on-call Pediatrician at Brant General Hospital.

James came back, and buckled our little 8lb. 2oz. boy in the car seat – so small… and the midwives asked us to sit down to chat about a couple things… I sat across from James – wanting to sit beside him, but there was no room. And then they started off… “your little boy is perfect… (and then all of sudden we are waiting for the “but”) but it looks like he has Down Syndrome.” I knew that this conversation was a hard one for them to make – and I didn’t freak out or anything – just kind of sat there. And James responded with complete sincerity and said something that I don’t’ remember – but it was basically – that’s okay, no big deal – we’ll love him just as much. And of course, a million thoughts start running through my head – and some kind of shock sets in…

They left us for the hospital, and we gathered our stuff in the car, and started the 10-minute drive. And then I lost it. I cried. Grieving for the boy that will never be. My heart breaking for the brother Erik won’t have. But it was a quick cry, and I gathered myself together as I saw my midwife waiting at the Emergency entrance. I brought the car seat inside while James parked, and after Triage and the questions, about 5 nurses and the doctor surrounded our little guy on a prepared bed where they did a bunch of tests. I sat down on a chair – relieved that my boy was being looked after, but just kind of dumbfounded. Tired, yet in suspense for what is going to happen next. The Pediatrician came to us – saying he suspected Down Syndrome, and that there are some issues that will need to be monitored, saying we will need to go up to Special Care Nursery for a bit. And then the midwife wrapped him up, and the nurse Melissa showed us the way up the unit which would be our home for a week. I got to hold him as we walked to the room – and since the nursery was so full, we had to be put in an equipment room in a little warmer bed. Nothing but office chairs to sit on, we watched our little baby being hooked up to a heart monitor, oxygen, and then IV. Nothing crazy, but it just seemed so wrong to see this happen. This never happens with my kids – they are always just fine.

 All these pictures are taken about 4-6 hours after he was born.

 The hours had gone by and it was now late enough in the day to start calling some family on James' side telling them of his arrival. 

Our little boy - Jason Mark - was born. 8lb. 2oz.
There was no time to measure him, but not quite as long as maybe the other kiddos were. 

We didn’t say anything about Down Syndrome, just that he was born, and was in the hospital with breathing complications.

I got to hold him only for a few minutes that first day – maybe an hour or so total. I tried to nurse him but once his eyes fluttered and he couldn’t handle the sucking/stimulation, so I had to put him down. I just stayed beside him, holding my hands in a cupped position over his head, whispering to him, and we were loving him however we could.

Dad Heikoop stopped by – he was the first person we told that he had Down Syndrome. (DS) And Dad loved on him – with tears – happy and connecting with someone that will remind the whole Heikoop side of Mom’s sister – Diane-who had DS.

The whole day was full of sitting and standing by his warmer bed – trying to love, being exhausted  – going to the car in the parking lot to call people, eating some food from the downstairs Tim Hortans… I did tell my family about Jason having DS – but we were trying to tell family here face to face. They were all so happy for us, as well as feeling our grief in the unknown, but with total acceptance.

 Mom stopped by with Katelyn and Leanne -but they weren’t allowed to see him – which broke my heart that Katy couldn’t get near her brother. She was so brave, wiping tears away as she walked away – leaving behind a little bear for him. So excited to see him, but not allowed.

We went home for a couple hours in the afternoon – I had a shower, took a nap on the couch, wondering if I could ever get up again. So incredibly exhausted. Went back to the hospital, where dear Mark and Jennelle came all the way up from Michigan to see him! Jason’s middle name is named after Mark. J They thought it was pretty special that he had DS – and we got to spend a bit of time with them.

Rob and Miranda showed up for a few minutes too, which was nice.  Only a couple people were allowed in at a time, so we did shifts. :)  

That night, we had to leave Jason behind – nothing any parent wants - and when we walked into the kitchen we saw a bunch of groceries and baby gifts that Mark and Jennelle had left for us – and on the counter, there was a Smart Wheels Airplane toy for Jason. And then it happened. I broke. Screaming and crying – saying to James how my heart is just so broken, and sobbed. We both cried. This boy that will no doubt be smart in so many ways, will never be a pilot, may never drive, may never this, may never that…… all those hopes or dreams that a parent has for a child’s life felt impossible. We don’t know what God will do, but it was a hard night to just grieve.

And then went to bed. I felt so alone in this – definitely unified with James, but that so few people knew what was all had happened and not having their prayers made me feel so isolated.

The next morning – it all felt like a dream. Like I had never been pregnant and that there was no baby. Just a deep sadness, when there should be celebration and people should be visiting to meet this little one.

But we got ready for the day, and stopped by the church at the end of the first service to tell the church family about Jason. First, we met up with Katy and Erik, to tell them we will be at the hospital longer. (and printed off a picture for each of the kids to have). Everyone reacted with love – some sharing the bittersweet sorrow of this new journey, while there was one dear lady that was so excited for us and Jason. I loved that. J James shared about Jason with joy and how this is God’s plan, so it was special – and then the elders prayed for us, and after some hugs, we went back to the hospital to see our little guy.

I felt so encouraged and strengthened knowing that at last, we had people praying for us in the way we needed it. His condition wasn’t’ a secret anymore, and that helped so much.

He had been moved to the incubator for jaundice, but he was doing okay. A bit of encouragement. Spent some time with him – then back to the church to join the whole family for lunch.

Then Tim and Lannette drove all the way to see us three, and Diane and Brad and Deanna, Ben and Mom H came to see him that afternoon. Special moments and it felt more like a day of celebration. 

And I got to hold him a couple times, even doing some skin to skin which felt so special. When you’re “allowed” to hold your baby, there is an incredible joy – realizing what a privilege it is.

Little chubby cheeks. 

 

 That night we put Katy and Erik to bed at Mom and Dad H’s who had them that night – and told them about Jason have DS. They really didn’t know what that meant, so we showed some pictures of the kids that have it, and explained that Jason will do some things differently. Erik got it, and what he said broke my heart; “you mean Jason can’t play basketball as fast”? More hurting hearts as we don’t what all Jason will be able to do – and seeing this older brother saddened over a change of plans – and tears from the two of them as they just wanted to be home all together made me ache.

Then the next week began – full of pumping, and sitting beside his bed – keeping on top of texts and emails of love. The kids were split up between the uncles and aunts, and tried to see them when we could. James took a couple days “off” to work at the hospital, sitting beside me while he answered calls/emails.

They took him on day 3 to McMaster hospital for an echogram, and found only a small heart murmur – big blessing in that with no follow up till age 3. Every day we would start with some encouragement in his condition, then it would dip down later in the day, and maybe it would be better by the next day. His bilirubin numbers and his hemoglobin were up, his breathing had to be stabilized though it never ever got to “normal” but we found a good baseline. All those things had to be dealt with, and he had a bunch of tests.

The nurses were all really good – and I learned some hospital diplomacy, J as I navigated this whole hospital thing –trying to understand what was necessary, and if he needed everything they were doing… I spent the last 3 nights out of 7 days there – trying to feed him, and pumping and being close. There was one night where I was at the end of my milk supply and they would have given him formula at the 2am feed – but my dear hubby drove the pumped milk over at 2 am in the morning. It was pretty stressful as they would only give me 20 minutes to feed him like 60 oz., weighing him before and after the feeds – but he was often take more than 5 minutes to start nursing… so then he would have to be tube fed. One of my midwives was a great advocate for me at the hospital – and we got through it all okay. I did so appreciate all those hard working nurses. 

No one ever said anything to us about Jason having DS. I think they didn’t want to make it hard for us, and as it wasn’t confirmed until his 7^th day by blood work, they may just have assumed he wasn’t. But it made me feel so alone. I didn’t know much about DS, and needed some support. But God brought this sweet older nurse to us one night, who said “he’s wonderful. I have a DS son”. And then I peppered her with questions, and she gave me some pamphlets on DS support groups. That was a huge blessing to me. I don’t need to know a lot about DS – in fact, I still can only take a bit of info in at a time. But just to know there was someone nearby – as well as all the amazing Special Need’s mom’s that my friends were connecting me with on social media, meant a lot. (thank-you friends!)

I had some sweet gals stop by, with gifts, food and love. I so appreciated it. 

 This is our dear Emily - who has been coming pretty much 3 days a week for the past year to help with cleaning, laundry, kids and keeping us sane. :) She is pretty amazing. 

Some flowers from Mom H.  

The amazing dad and my rock. 

Dear Evie that used to work for us a few years ago before she moved away. 

Then finally – a week after he was born – we were discharged. The Dr. came in and asked a few nurses with him – “is there any reason why he can’t go home?”. I answered “no” J and he let us go! It felt like a miracle! I couldn’t believe it – we were going home!!! I did one last weigh before nursing and after nursing, and they were so happy with the 70-gram difference. Such a relief.  James came and picked us up, and we strapped him in his seat, and left – getting a taste of the whole baby-born-in-the-hospital experience, wondering if you’re really allowed to leave with such a precious gift!

That weekend was so nice. Just sitting in my bed with my little guy, loving him, and resting. I also cried a lot, as it was just two at home, wondering how we were going to do this new change. Took him to church where he got lots of love. All the kids were still with various uncles and aunts – they were giving us a few days of quiet which I needed. I thought this was just the beginning of our new normal, but things got a bit crazy...

That Sunday afternoon he started screaming, and stopped pooping. He wouldn’t nurse well, and it was awful to see him like this.  I called the midwife at 2 a.m. – wondering if I should go to the hospital – she was coming to check him later that day so she said you can wait – or whatever you want. So, I waited…didn’t want to go back if we didn’t need to – and didn’t want to be the mom that worries over everything…but something seemed wrong. Just felt it in my gut.

That day, he continued to scream and looked uncomfortable. When the midwife came, she thought his heart was too fast, and advised us to go back to the hospital – but thankfully first, all the kids (except Leanne who was in Ohio with Mom and Dad Heikoop) came home to see him. (Katy and Erik had just come home -they thought to stay... so excited to see their little brother at last!)

Proud big brother. 

Heather had just dropped of Katy and Erik and stayed for a bit which was so special.

Then Diane brought the girls home to meet Jason, and we got a picture of all of us together, 

...then headed back to Emerge where they were waiting for us once again. 

James dropped us off, with the intention of seeing us later – and headed to his first night of evangelism with the “Brantford Challenge” mission week going on at our church. We both thought he’d be admitted and we’d just have to stay the night. Thankfully the Dr. on call, ordered an x ray – and on the way back from it – the nurse quietly told me that that there was “free air” and that it looked like a hole in his bowel… I knew what that meant. Septic shock and totally understand that his life was on the line. I never freaked out – which I think made the Dr. wonder if I understood. He just kept saying “mom, he is very sick.” They ordered the ambulance, and I called James – telling him to get here fast. He was in the middle of witnessing to someone -and didn’t understand how bad things were. I called him three times to make sure he got it – and God did a little miracle for us. He was without a car – but found another person on his team – and within two minutes, a friend got the van there! (Thanks Shelly) and he came – bringing the car seat we needed for Jason’s first and hopefully last ambulance ride.

I got in the ambulance with him and the team, and off we went. Looking at little guy and knowing surgery was about to happen – texting people as we went. Talking to the nurse who was acting all normal – because this is what she deals with Every. Single. Day. James following behind in our van. Wondering and praying – and even though I was scared, there was peace. God gave it to us in the situation and we just rode the wave.

Arrived at Emerge. and for the next couple hours, nurse after nurse, team after team tries to get an IV in and blood taken in prep for surgery. His veins are so small…  I would hold Jason with my hand cupped around his head and hold onto his arm as they poked and poked him. The surgeon comes in – a Christian lady I figure out a bit later – chats about what needs to happen. Finally, the the last amazing nurse to try in Emerge walks in to get that IV in his little hidden veins, and I say cheerfully – “the miracle worker” – and she right away said, “that’s God.” I corrected my words in agreeing with her, and she started to work on Jason. She had a charm hanging off her stethoscope, and I noticed it was a Bible Verse, from John. That’s neat I thought… and while they kept poking him, I sang the song I sing to all of my kids when they’re babes – and crying in the night “Jesus, Jesus, there’s just something about that Name…” and she started singing with me… “Thank You God, she’s a Christian”. James thought there were angels at first. J So thankful for that. And I continued pray quietly, but out loud for this IV to get in there… but it has to wait to be done in the OR, and they need to do it soon… so finally, after being there for a few hours, at 10 p.m. they wheeled him to surgery, explain the process, that’s there’s very little risk of losing him, and we say goodbye to our little man, in a very big baby bed. Wondered if he’ll make it out…. cause I know he’s pretty sick. 

 (Saying goodbye before leaving him with the surgeons)

For the next 4 hours, we wait in the family room, and in comes Henry and Heather – driving all that way to sit with us. Bringing me a blanket to cuddle with. Talking and chatting. And Rob & Miranda were driving by, so they got supper for me, since I hadn’t eaten yet. Called mom on the phone to update her, and waited. Around 12:30- H&H left for home, and we tried to sleep a bit. Maybe 15 minutes, on those hard waiting room chairs. The nurse that was a Christian – Anna was her name- stopped by on her break to see how we’re doing. What a gift. Found out more about her as believer. Then back to waiting….

Finally, the doctor walked in, and all was well. Explained what they had done, and how full he had been of poison. Took an hour just to get everything ready to go (IV and prep) and then 3 hours of surgery. The procedure was called a loop ileostomy where they took a small part of his intenstines out, so he will now poop in an ostomy bag for a few months until they can reverse it – if all would go well. They were afraid of Heirshprungs disease – something common in DS – where a large part of the bowels has to be removed – resulting in diaper wear their whole lives.  Biopsies were taken, but it would be a week before we would know. (which was negative we found out)

She took us up to see the little man – 10 days old, and on Morphine – breathing tube stuck down his throat, and so so little. All hooked up, and not what we wanted to see. But he was breathing, alive and doing well. I found out later how serious the whole thing was… that he was turning blue, and they had to work quickly on him… so close to losing him. But he was in God’s hands the whole time.

We went home and slept…. He was sedated and we needed our own beds. The next morning, I spent a little time with Amy and Laura who were at Diane’s, before heading back to the hospital. He was still sedated, but doing okay. I sat beside him, doing my whole hand around his little head, talking to him, and figuring out this amazing new situation at McMaster Hospital. He was in Pediatric Intensive Care – with two nurses on him for a bit, and got to know the revolving doors of nurses. They said that he was more settled when I was near. So neat to hear them confirm that my presence was making a difference to him…  you know it must – but it does medically too! I would text or be on my phone while beside him, then love on him, and all….

But it would break my heart to look up from my phone to see him crying – but with no sound- because of his breathing tube. I wanted to just take it all away from him. I just wanted to see him as my little baby. With no tubes, with no worries, with no Down Syndrome. It hurt so much. 

Then the bottle feeding began. :) 

We were well looked after at PICU for 5 days, and had said goodbye to him one Saturday night around 11 p.m. – got home and got the call that they were moving him out of Intensive Care into the children’s ward, and that I needed to come right back… so I quickly showered and 25 minutes later, we found him moved to his new ward – a shared room. I got back into the swing of staying over with him – turning that chair into a cot – armed with my sheets and blanket, and began the grueling bottling feeds of every two hours, even when you’re falling over. (I had to just kept pumping, as they wouldn’t let me nurse him yet - they needed to know how much he was getting).

For the next two weeks, I stayed with him, and was there to learn and hear how things were going from his amazing team at McMaster. There was a group of about 9 doctors (resident and senior), his daily nurse, pharmacist, respiratory nurse, and all that would go around every day – and during his stay we had the Hematologist team, Endocrinologist team, GI team, Infectious disease team, and his day/night nurses, and Physical Therapist, Dieticians, His Ostomy Nurse and volunteers. It was so busy. I barely had time to pump. And when I would, I’d have to go downstairs to do it – no plug in on our side of the room. So, during the night right after his feeds, I’d be pumping downstairs. That got tiring. But we just kept going. And I knew it was the grace of God. That I had not fallen apart. That I could keep laughing, and going when I had no strength left. That I could help deal with his pain when he would get blood taken, or any type of tests that he had to do. That I could sleep like it was the most comfortable bed ever on that cot. All those things were gifts.

I learned how to change his ostomy bag, and how to top him up with the N.G. feeding tube. I appreciated that the nurses let me do as much care as I could, and taught me how to check that the tube was in the right spot, and how to give his medications. They said “I was rocking the ostomy care” which I appreciated. J

The day I got to unhook from his monitors and take him for a stroller ride around the hospital was pretty awesome.

 Some freedom from our room. Leaving without having to worry that he’d wake and cry for me, and bother the roommate etc. I would try to run to have a snack at the Ronald McDonald room when a nurse was doing her checks with him, so he wouldn’t be alone. They were so busy they couldn’t look after his cries all the time, nor would I expect them too! And the time I took him to the nursing room, and had some along skin to skin time was so sweet. No one could find us. We were just us. I was dying to just take him from his bed into my cot and cuddle with the pillows. And when that happened that was so beautiful. A Dr. poked her head in asking a question, and I was there cuddling Jason, feeling guilty like I was being bad as I held my boy….J I’m such a rule breaker… ha-ha.

I learned other’s stories in the hospital – room mates with situations that weren’t always nice. Oh my - You can hear everything through those curtains… Family drama and all. 

There was one couple we kept seeing over and over… a couple from Turkey who were refugees, and they had a DS son who was 6 months old and had surgery because of a blocked bowel. We would chat, and James was even able to share the gospel with him. The wife spoke very little English, so I would talk with the man sometimes when seeing him around the hospital. Very nice, and pray that God will redeem them.

We got more visitors that loved on us – Shelly came and brought me some new clothes-what a gift! Janice came a couple times bringing me food, and lots of family came, Katie and Erik came once we were out of PICU, and Laura and Amy came too.

 James stopped by every night after work, often bringing me breakfast in the morning, and it was like the good warm kind of breakfasts.  Shantel came, Krisandra, Vivian, and Kelly came bringing me supper – so blessed. I was given lots of chocolate which was amazing and was often my breakfast, on the days James couldn’t come, and I couldn’t’ eat till 1p.m. sometimes, as it was so busy with doctors and trying to pump in the mornings.

 

 (a journal Kelly brought me to record Jason's story - and my heart in it all)

 In his hilarious hospital jammies, before I brought in sleepers for him. 

This is the little doll they gave us - to teach the kids what an ostomy is and how it all works. 

It had been getting so crazy with having our family in so many spots when we decided we needed to take my parents on their offer to come help. All of the aunts and uncles had been so amazing to take a few kids for so long, but we needed to get them together. Mom and dad flew out, and for the last week of our hospital stay, looked after all the kids on the home front. Very happy that they were all together! And mom and dad came in the evenings to visit together.

 Meeting Jason at the hospital. 

 Playing in the outdoor courtyards during visits. 

 On a walk for a bit. 

Dear Grandma getting some cuddles in.

At last, all of Jason’s numbers were good – and they said we could go home! That was another amazing moment. I couldn’t wait!! So, James picked us up – we stopped at Whitebird for a bit, and then were home. I got a couple days with Mom and Dad at home before they had to leave – so appreciate the sacrifice they made to fly out last minute. We all enjoyed them.

 Isn't he the cutest?!

Then it was back to normality for a bit… Home life and trying to get everything ready for school to start the following week… 

...when the Sunday a week later, we were at an event when I noticed he seemed too hot – quick thermometer check – yup a fever, so we had to go right back to McMaster to get him looked at. A fever could mean a whole bunch of things….

Then for the next 6 hours, they tried again to get his blood taken – which thankfully the blood part they got – but to get an IV in was impossible. They called every team possible at the hospital on the long weekend to try to get a line in, but nope – his veins are so small. When they thought they got it, it was actually an artery in a “wrong” spot. He just confused them. J They also tried a Spinal Tap to find out the reason why he had a fever but had no success with that. I felt so bad about that one – the Dr. was pushing for that, but they couldn’t get it, and he was crying and crying. Your heart breaks, but I just had to push aside any emotions for all these weeks, or I couldn’t handle it. In the end, they decided to leave the IV out, and wait on the bloodwork since he was still nursing well. Very thankful. It’s just so exhausting.

But back in McMaster we went – this time in an isolated room which I was thankful for. So glad to just be us in a room. James left for the night, and we started a smaller stay – only 3 days. But they felt long. All the Doctors and nurses had to put on gowns and masks when they came in. I couldn’t’ take him out because of the fever which thankfully lasted about 24 hours – with a small one later on… but we just kept on.

And then once again – it was leave time. It always feels so amazing when James picks us up, and we go home. This time as it was the long weekend, and our dear helper Emily was there the next day, we didn’t need anyone for child care, and we were all home together as family!

And now, we have been home since the long weekend in September.  (*other than another 4 days when he had the Noro virus in October) We even made it to the Heikoop cottage time in September! He is doing so well. We have an RN, an ET (Ostomy nurse) and a Dietician that comes every few weeks to check on him. And we go to the Pediatrician every few weeks as well. We just had a Coordinator come for the children’s therapy center to start making arrangements for the upcoming therapy he will be given – depending on his needs. So lots of appointments, and busyness.

Dear Anne-Marie has taken a leave of absence from her job for a few months to help us with school , those appointments and nanny our kids. So thankful for her to come in during this crazy transition time and be a stabilizing force for us. Very huge gift.

Now, to the question that a lot of you ask… how are we doing with having a child with Down Syndrome? How am I really doing?

Well, I’m doing pretty good. God has given such grace and so many people have prayed. I know God’s hand is in all this. I do cry. I hurt sometimes looking at him… and often I’ll be taking pictures- trying to get an angle that makes him look like a typical child – but he isn’t. And I have to get used to it. Sometimes he almost doesn’t feel like my child – as he has a different look -  but that’s getting better and better as we have more interactions. He is smiling and cooing, and man – what a sweetheart.

Honestly, I can’t believe he’s mine. In the hard and in the good. I hear what people have been saying over and over – that he is a gift, so precious and so wonderful… yes, that’s all true. He is a gift. And we love him dearly. He is also a reminder that because of sin, we live in a fallen world, and he is broken. Yes, I know, we ALL are broken, not just the disabled, but just a reminder that this lifetime is short, and in heaven Jason will be made perfectly whole. That is amazing to me – and also made me feel desperate because depending on his intellectual ability, he may have to make the choice of accepting Christ’s salvation for himself…and I just pray, God will redeem him.

He must be made whole one day… No more broken bodies in heaven.

Jason is given to us for a reason, and I do get excited sometimes about the adventure he brings. Now the typical milestones kids have, as wonderful as they are, are even more exciting with him! I don’t know what life will be like, whether we will ever be empty nesters, or what it will be, but God’s writing his story. And he does give good gifts. Prayers for me are really appreciated – cause there are mostly good days, but every so often it’s hard. J But you know what, our world gets so much bigger. And sometimes I don’t want that, cause I already feel like I have a big world, but God wants to grow us in all this.

Now I follow families with special needs kids on Instagram; I understand more what they are going through. The hallway at McMaster that has pictures of DS kids on the wall doesn't make me ache as much when I see it. And now when I'm out with him, and people see Jason –they find out-often because of his awful hair cut's :)  - that he had some hospital stays and the why, and then boom…they tell me “My son has special needs too”. And we have something in common, and I can share how God is keeping us through these challenges. All this information comes out of hiding, as we connect and support each other.

God is good. All the time. J And we are so thankful for this son. I know I'll continue to love, laugh, and cry - I hear it's normal to grieve, and I know I'll look back and tell "my younger self" that it will be okay, and even awesome. 

A friend posted this her artwork on her instagram account, then sent me the printable that she sells - and I'll leave you with the quote from it.(check out her lovely stuff here!)

"The will of God is never exactly what you expect it to be. It may seem to be much worse, but in the end it's going to be a lot better and a lot bigger." - Elisabeth Elliot

And I totally believe that it's going to be a lot bigger than I could've ever imagined for our family. :) 

x