19 May 2014

Our Journeys....


The other day, I took Adele for therapy and I had a moment. I know that I will have many moments over the years, some will be amazing and some will be worrisome. During therapy, I asked if she was doing well and if we were progressing. The OT paused and said that she was doing well and that she has worked with little ones who have weaker muscle tone. I feel that Adele is so much stronger and I see her growing into a sweet and bright little girl. I know that she is incredibly strong but still floppy. She isn't sitting up unassisted yet, but can actually sit up for a moment with no support.
I hear all of the time that she will get there and she will hit her milestones when she's good and ready. I know all of this. I get it. She will crawl and walk and talk and sit up with no help from mom and dad. It's just that you have these little moments once in a while, moments where you question if you are doing everything possible to ensure success. Are we doing enough OT at home? It's all new to us. After Brinley was born, she was handed to me, we snuggled, I took a shower, she came with us to our room, she was breathing just fine, she was healthy and perfect. We stayed a couple of days because she was a bit jaundice but nothing that was too concerning. We put her in her car seat and went home. It was all very easy.

Brinley at Chuck E Cheese

I was induced with Adele at 35 weeks, James and Ange missed the delivery because they were sent home, Adele was born, I had one little kiss and she was gone, my blood pressure shot up, was not allowed to move for 24 hours, Adele was in the NICU. It was a different journey from the very beginning. I've mentioned this before, we take for granted that our children can breathe, that they can go in a car seat without alarms blaring in our ears, it's all been different. I never knew that car seat tests even existed. They became our goal with Adele. Could she keep up her oxygen levels, she needed to stay above 90. She had three car seat tests in one day and it was so draining, it was exhausting for Adele and we were stressed and worried and spent four and a half hours staring at machines. This was all new to us.

We are still new to this life, the life of having a little one with Down syndrome. We don't google. We don't spend our time reading statistics or perusing the web for all that could go wrong with Adele. I heard the word cancer for the first time weeks after we delivered Adele. Children with Down syndrome have a higher chance of getting cancer. This was devastating for me. I hear people say that they are still just babies and children, they are just like any other child, but the truth is, they are not just like any other child. There are many more concerns and health issues that can arise. I didn't know that she would need her hearing and vision checked regularly, I didn't know that she would need her thyroid checked, I didn't know that she would need blood tests done at certain ages to make sure that she doesn't have certain diseases. I am glad that I didn't know. It wouldn't have changed the path that we chose, it wouldn't have changed any decision that we made when pregnant with Adele. It would have just caused me more stress. I deal better when things just arise. I don't need to know everything in advance. Just tell me when I need to know and when we need to get the tests done.

When I look at our journey up to this point, we have been blessed. We have been so lucky. We spent 6 weeks in the NICU, compared to others who have spent months. Adele's heart was healthy, we didn't need surgery, compared to so many who had surgery within the first few days of life. Adele had an NG tube because she was so sleepy and had troubles staying awake for feedings. Her tube came out the night before we brought her home from the NICU, compared to others whose child still has a feeding tube at three and four years old. Adele didn't pass her car seat test right away, but she got there and we could take her home in a regular car seat, not a car bed, compared to others where it took weeks to pass a car seat test and still had to purchase a car bed to bring their baby home. Adele's hearing is perfect and her vision is also great. Her right eye crosses a bit but that can easily be fixed with glasses and some strengthening, compared to others who have a child with significant hearing loss and vision concerns.

Brinley's Superhero Sidekick Cape! :)

I've heard many times that God only gives you what you can handle and God knows that I can't handle surgeries or any major bumps in this journey. I know that if I was put in the position, we would have to find the strength to cope and I would need a lot of support from family and friends. I can handle little bumps that arise periodically, but that's about it.
I have a friend, her perfect little princess is 5 years old and has endured more than 30 surgeries. I don't know how to deal with that. I hear some of you saying that you do what you have to do, but unless you have been put in this position, we have no clue. I want this little girl to start living life. I want her to run and jump and not have to worry about the next hospital visit. She deserves to live her childhood.

I have met so many amazing people on this journey with Adele. Moms and dads who have overcome so much adversity, so many tests, so many surgeries, so many hospital stays, travel, spending weeks at Ronald McDonald House, spending out money to get the best tests, the best doctors, the best for their child. I have met so many superhero moms and dads, who don't know that they are superheroes. They just do what they have to do to make sure that their child sees another day.
Most of us don't even comprehend this life. We have no idea. I have no idea. I have taken Adele to ACH for appointments, then we get to go home. I have friends, whose children have never stepped foot out of the hospital, never had the opportunity to breathe fresh air, have never played with another child.
Never take for granted that you have healthy children. I know that some days, you want to put them on Craigslist and Kijiji :) and you've had enough, you are entitled to have these days, but be thankful that you have beautiful and healthy children. Savour all of the wonderful moments. Kiss your children all of the time. Hug them. Spend time with them. Laugh. Love so deeply that you can feel it in your heart. Your children chose you to be their mommy and daddy. You were given these perfect miracles for a reason. You are blessed. I am blessed.

For Mother's Day - my blog turned into a book <3