Limitations - What I've Learned so Far

Since Maddie Grace's birth I've been very aware that she will face certain challenges. She will likely walk later than average, she will likely speak later than average, her cognitive ability will likely be delayed. All of that can be really scary and overwhelming to a new mother. It's overwhelming to me. I find myself sometimes analyzing her every move. I often think is that normal behavior or is it related to her diagnosis? One thing I'm working on, and I have a feeling it will be an ongoing process, is seeing past Maddie Grace's diagnosis. After all it's what I ask of others so at the very least it's something I need to be practicing myself. I think it's a delicate balance, being aware of where she needs to be in her gross motor, fine motor, and social skills and not allowing myself to become consumed with making sure she's on target. We are going to be starting early intervention soon, but I find myself panicking because we haven't started already.

I want the world for Maddie Grace but she is constantly reminding me that everything is going to be ok. Like on Friday night, we were practicing tummy time on our new mat for the hardwood floors.  Maddie Grace has been incredibly strong since birth. She is constantly kicking her feet and moving her arms. She is able to get her hips and legs in the air, but looses her balance before she is able to flip over. So I've been supporting her hips with one finger to encourage her to roll over from her belly to her back and to help her build her muscles. Well Maddie Grace was getting extremely frustrated being on her belly and was determined to get out of that position.  I wasn't touching her at all, in fact, I was talking to Adam, and all of a sudden she flipped over onto her back all by herself! Adam and I were amazed! We cheered like she had just finished running a marathon.  Her Aunt Tashia even reassured me when I mentioned it was probably a fluke that "it takes muscle strength, control, and determination" to roll over. (She has since rolled over two more times). She already amazes me at every turn!

I refuse to set limitations for Maddie Grace; I know she's an individual and will never cease to amaze me when it comes to her development. I'm just going to have to keep reminding myself to look past her diagnosis and stop analyzing her every movement. I know that with time the Down syndrome diagnosis will fade into the background of our lives. Until that time I'll cut myself a little slack and rejoice in the everyday achievements.

3-21 Let's Celebrate that Extra Chromosome!

One of my biggest goals with this blog is to help raise awareness about what life is like with a child with Down syndrome. Honestly, I've never known an individual with Down syndrome. I don't really know how I've lived my 28 years never having known this amazing group of people.

I want people to understand that life really isn't too different just because Maddie Grace has a disability. Right now we have a newborn. We've been given so much information about what our life will be like with a child with Down syndrome, but what I don't think people realize is that Adam and I are first time parents and at the end of the day we are learning how to be parents. We are learning which diapers we like, and how to put those diapers on just right so that we don't have major blowouts! We are learning how to soothe a crying baby.  Maddie Grace and I are slowly getting into a nursing groove. All of these things have nothing to do with Down syndrome and everything to do with being first time parents to a newborn.

All of that being said, today  is World Down Syndrome day, and it's a day to celebrate those individuals who rock an extra chromosome.  The goal today is to do something extra to help raise awareness about Down syndrome.  It's a pretty awesome day if you ask me.

Part of my goal today is to show you what Down syndrome looks like to us.  Let's be honest here, Adam and I have had to endure some hard things in the last few weeks which were all related to Down syndrome.  We have been to a cardiologist, we have had meetings with BabyNet, we are on the schedule to visit the Down syndrome clinic. We also spent the day our daughter was born full of fear, anxiety, and grief. Those were all emotions that don't typically surround the birth of a baby, but they are real emotions and the emotions we went through. One thing I want to portray is truth and those were our true feelings.

But, it's really important to share that we also experienced great joy on the day Maddie Grace was born:

We've had first baths (and the scary jitters that go along with that!):

We fight the mat everyday during tummy time:

We have lots of cuddle time:

And let's not forget story time:

Hopefully, you can see that while we will have a different journey from those with typically developing children, and let's be honest, that journey will be harder at times, we really are just like everyone else with a newborn. And ultimately I hope you see that my child has value, her life is a blessing, and that she has a purpose!

Updates on Maddie Grace

Tonight, I thought I would give everyone a few updates on Maddie Grace. We visited the pediatrician today and Maddie Grace is up to 7 pounds 2 ounces - such a big girl! She's gained almost 2 whole pounds since birth. We went in today to have the doctor check out some issues we've been having with reflux. Turns out Maddie Grace might have an intolerance to dairy. It's not an allergy, just an intolerance. Which means I have to give up dairy, which is going to be so hard for this dairy lover!

We also had our first meeting with BabyNet today, which is the program that coordinates services for children with disabilities in South Carolina. So the process is beginning.  Our first concern right now is the tone in her tongue and jaw. So we are hoping to get started with a speech therapist as soon as possible. So many functions are related to a strong jaw, tongue, and suck.  I feel like we are already behind though since we didn't get a diagnosis in the hospital. But we are slowly catching up and Maddie Grace is doing really well! She's healthy and growing, and so incredibly strong!

Here is a picture from today:

Her hat today is in honor of World Down Syndrome Day, which is tomorrow on 3-21.  We will celebrate Maddie Grace's extra 21st chromosome tomorrow.  I have a special post planned for tomorrow to let everyone know how we celebrated and what exactly it means to us to have a child with "designer genes!"  So if you feel compelled do something extra tomorrow for the people in your life in honor of Miss Maddie Grace Garrett!

Please love my child...

After Maddie Grace was born, she spent about 15 minutes in the OR with me and Adam, but was then taken to the newborn nursery to get cleaned up and checked out. Adam was able to go with her, and got to introduce her to her "entourage".  She had so many people waiting for her arrival they ran out of chairs in the waiting room!  They finished stitching me up and I was taken to a recovery room, and there I stayed alone, for probably 30 minutes.   To be completed honest, I was full of fear. (In Adam's defense he wasn't told I was out of surgery so that's partly why I was alone for so long). I've mentioned before that both Adam and I knew that Maddie Grace had Down syndrome in the OR. We saw the features in her little face. So I sat I'm the recovery room full of worries and fears. I knew she was initially healthy and came into the world screaming so that wasn't where my fears were coming from. My most immediate and overwhelming fear was that no one was going to love her. As irrational as that sounds, I was consumed with the fear that no one would love my little girl.

She and I had been through a lot together,  we endured a complicated pregnancy together and I was madly in love with her. But I couldn't shake the all consuming fear was no one else would feel that love for her.  I even worried that Adam wouldn't love her.  Clearly, he is more than in love with his little girl:

Shortly before my mom came back to check on me in the recovery room a nurse stopped by and said that there were at least 30 people standing outside the newborn nursery windows admiring our little girl. They even broke the rules and allowed everyone to go back and see her in pairs of two.  At that moment my fears slowly started to subside, but it was a slow process.  I was worried that Maddie Grace wouldn't live up to the child our family and friends had imagined, and I worried that they would be sad.  Once we had her official diagnosis, Adam and I began the process of telling our friends and coworkers and I felt that fear again. What if no one loved her? Spoiler alert-everyone is quite smitten with our precious baby.  The outpouring of love has been amazing and very inspiring.

So here's my advice for anyone who has a friend or family member who has given birth to, or is about to give birth to a child with any diagnosis: All a new mother wants is for you to love her child.  Accept her for what she is, a beautiful gift.  Tell your friend, coworker, or family member how exceptionally wonderful her baby is.  I promise that will mean the world to her and ease her fears.

Prayers for Maddie Grace

I'm a pray-er.  I pray all the time, but I must admit I do pray more often in times of trial and turmoil.  It's something I'm working on; I need to make sure I'm saying prayers of thankfulness as often as I'm praying for my own benefit.  I'm both a very spiritual person and a religious person.  I prayed vigorously during my pregnancy.  Some of you (at least I hope people are reading!) know that my pregnancy was difficult to say the least.  I have blood clotting disorders that complicate things for me during pregnancy and complicate things for the baby during pregnancy and delivery.  So I constantly prayed for health, that I would be healthy and that Maddie Grace would be healthy.  That was my daily prayer. Starting when I was 18 weeks pregnant,  I prayed daily for not only health but that Maddie Grace would have typical chromosomes.  I prayed that prayer every single morning on my way to work.  Obviously, Maddie Grace was born with an extra chromosome, and one of the hardest things to accept about prayer is that sometimes prayers go unanswered.  I think that's one of the hardest things to reconcile, that sometimes my will and God's will aren't the same.  I am realizing every single day that Maddie Grace was made for me and Adam.  We were born to be her parents.  And I have a feeling we will only come to realize that more and more as she grows up.  And I think there will come a time that I thank God for unanswered prayers.  I'm not going to lie, it's not always rainbows and  sunshine.  Besides the moments I think all parents of newborns have where you wonder, what in the world have I done? Those moments usually happen when Maddie Grace thinks midnight is a perfectly acceptable time to get fussy, or when she has spit her pacifier out for the thousandth time and I really want to get the duct tape out and tape it to her face. There are also moments that it truly hurts to think about the future, but those moments are coming less and less.

When I was pregnant, my Aunt gave me a book, Praying the Scriptures for Your Children, by Jodie Berndt.  I have really enjoyed this book and definitely recommend it to anyone who is a mother, or is currently pregnant.  There is one scripture from this book that I keep coming back to, that I've read over and over:

Fear not, for I have redeemed you;
I have summoned you by name; you are mine.
When you pass through the waters,
I will be with you;
and when you pass through the rivers,
they will not sweep over you.
When you walk through the fire,
you will not be burned;
the flames will not set you ablaze.
-Isaiah 43:1-2

This scripture reminds me that God knows Maddie Grace, through and through, that she was His first, and has been given to Adam and I for awhile.  Whenever I have my moments of fear and hurt about the both the present and the future, I read these words and know that Maddie Grace will be safe wrapped in her Creator's arms. 

Hopes and Fears

I think every new mother has hopes and fears for their brand new baby. I think the fears for a new mother of a child with special needs can be overwhelming. I have certainly struggled to not allow my fears to overwhelm me to the point that I can't enjoy every second with Maddie Grace. 

I was thinking about this topic the other day.  I was thinking about my fears and how some of them may not be that different from the fears every mother faces with a brand new life. Sure, I worry about Maddie Grace's heart (which luckily we've avoided the major heart defects, she only has one small hole that they are monitoring every six months with the hope that it will close on its on). I worry about her cognitive ability, and speech.  And those are worries that I'm sure mothers of typically developing children don't really think about.   But I also worry that she won't have friends, that she won't get asked to the prom, that somewhere down the road she will have her heart broken.  Not necessarily by a boy, but by life in general. But isn't that true for every new life, there's the chance that she won't be miss popularity, that she won't be asked to the prom.  After all, I wasn't asked to the prom myself and I turned out ok.  I hope I instill in her the confidence to go anyway, that's what I did.  And if we are all being honest life has broken our heart a time or two. That's apart of the human experience - that our hearts will break.  That sometimes life isn't fair and that sometimes life just plain hurts.  As a mother that's going to be hard for me, as I assume it's hard for any mother.  No one wants to see their children hurt, but I'm sure every mother will have to endure that.   I just hope that in those moments I have the strength and wisdom to be the best mother I can be to Maddie Grace, that I give her the comfort and love she needs to keep on trucking. 

When I stop and think about my hopes, my biggest hope for Maddie Grace is that she will be happy. That she will have an amazing childhood full of laughter, friends, popsicles on the front porch, bike rides around the neighborhood, swinging in the park, trips to the zoo, birthday parties, and the reality is that Maddie Grace will get to experience all of those things. Adam and I plan to make sure she will have all of those things.  I want her to embrace life and suck all of the joy out of everyday. I guess that's a pretty common hope for all mothers, the hope that their child will find something that makes them truly happy - that they will experience true joy in this life. I read this statistic the other day, that 97% of adults with Down syndrome were happy with their lives. I'm not sure you would get that same number if you polled most adults. I will take 97% any day. And I will do everything in my power to make sure Maddie Grace falls in that 97%. 

And just because I think blog posts are better with pictures (and because she's just so adorable!):

An Email

I guess I could start at the beginning of my pregnancy to tell this story but I feel that may be another story for a different day. I promise to go back and tell that story because my pregnancy was anything but ordinary. I think the best place to start is with an email. This is the email Adam and I sent to our friends to tell them about Maddie Grace and her diagnosis. The outpouring of love and support we've received has been amazing. There are no other words for it. Adam and I are so blessed to have so much support. So here it is:

I'm not really sure where to begin with this email except to say this is probably one of the hardest things I've ever had to write. Maddie Grace has Down Syndrome. We got the results of her chromosome tests back on Thursday.  To be honest this was not a total shock to Adam and I. I had a screen positive during pregnancy. We were told we had a 1 in 28 chance of having a child with Down Syndrome. After a very in depth ultrasound that was clear we decided not to dwell on it and opted out of a amniocentesis to get definite results. If I'm being honest I knew Maddie Grace had Downs Syndrome from that first screening. I did a lot of research. But things looked good for us since our risk factors were very minimal since our ultrasound was clear.  The last 18 weeks of my pregnancy were filled with so much fear about the health of our little girl that I was so ready to meet her on Valentines day.

I knew the moment I saw her. I was filled with so much joy because she came out screaming and crying and was healthy!  Her apgar score was a 9.  She was finally here and transitioned very well. After an in depth screening by the NICU team in the OR she was handed over to us. She was healthy and she was finally here. We were so happy.

While I was in the recovery room we had a consult with a neonatologist. He was  extremely positive and said that her facial features were consistent with Down Syndrome. That was the only characteristic he could find. There were no other markers.  He said at that point that the chances were higher that she didn't have Downs. The next day our pediatrician confirmed that he could only find one trait and that was her eyes.  We would have to wait for her blood results to know for sure. Again, I knew, but it was a hard couple of days. Some days I would see it so clearly then other days it was less obvious to me. It was hard because all of the doctors seemed convinced that she had typical chromosomes.

Adam and I feel so very blessed to be the parents of this beautiful baby girl. But if I'm being totally honest our hearts are breaking a little. They are breaking for the struggles our daughter will face. However, I'm convinced there are no accidents. We were sent the daughter we prayed so hard for. Maddie Grace is already such a blessing and a fighter!  We are ready to begin this journey, and I have a feeling it's going to be more beautiful than we could ever imagine. We are certain we will be equipped with everything we need to handle any hardships Maddie Grace may face as they come. We plan to fully embrace this diagnosis without letting it define our child. We trust that with lots of love and support Maddie Grace will be destined to do amazing things. I fully believe babies are to be enjoyed and that's exactly what we are doing, enjoying every minute. The only thing Maddie Grace needs right now is acceptance, and most importantly love. We will take all of the therapists and added health concerns as they come. I'm sure we will have bad days but I know they will be far outnumbered by the good days.

If you would like more information about Downs Syndrome you can visit this website: www.ndss.org.

We love you all!
Kayla and Adam