Rambling...

This post was going to be about prenatal testing based on something I read the other day.  But while writing it took a different turn.  And as the title suggests it ended up being a rambling post.  That’s what I love about pouring it all out; I sometimes don’t really know where these things will end up.  But I’ll start here:  I read a comment on a blog the other day that said something along the lines that doctors don’t like to direct people who are expecting babies with Down syndrome to blogs or other “real life” encounters because they tend to be overly positive viewpoints.  Granted I read this in a comment section of one of my favorite blogs which, let's face it, comments on the internet (like a lot of things on the internet) could be written by anyone and almost always have absolutely no basis in fact.  But this one got me thinking.  I’m an optimistic person, my glass is always half full. I will always look for the bright side of any situation so maybe I’m not the best person to shed light on this, but raising Maddie Grace has been EXTREMELY positive.  Maybe all of the real life experiences are overly positive because there’s not much negative to report.  Or probably more likely, the negatives that come with raising a baby with Down syndrome are far, far outshined by the positives that come with being a mother.  Aren’t there negatives that come with parenting any child?  I was explaining it to one of my non-mother, non-pregnant, friends the other day, when you describe parenting it all sounds so un-fun.  The opposite of anything exciting or the least bit enjoyable.  I mean you’re up all night, you’re covered in poop or other such baby goo, getting out of the house can be a challenge, if you’re like me you are shackled to your pump, and you have to give up glorious dairy, etc.  But it’s not like any of that matters to you at all, it all kind of blends into the background because there is such a profound sense of purpose and love in being someone’s mother.  It doesn’t matter that you smell like rotten milk or that you can only get yourself 97% put together in the mornings because you get to be someone’s mother and that feels like the most important thing in the whole world.  When that little baby smiles a big gummy grin, or giggles from her head to her toes at your horrendous singing, all the negative just slips into the background.  If that’s true for parents raising typically developing children, why can’t that be true for me raising a child with Down syndrome?  Why can’t my negatives slip into the background too?  Granted they are a little more profound that a little baby poop, or being in a constant state of tiredness, but why can’t they be put into the same trivial complaints as those? 

Now here’s where I’m going to get real and admit, yes there are some pretty sucky things  that come with have a child with Down syndrome.  I get really frustrated with all of the endless paperwork, keeping up with all of the appointments, and let's not forget the constant flow of medical bills (which could seriously be a full time job – and Maddie Grace is 100% healthy, so I can only imagine how exhausting it is when there are medical issues as well).  For example, Maddie Grace in her 5 months of life, she has been to her regular pediatrician the standard amount (2 days, 2 weeks, 4 weeks, 8 weeks, 3 months, etc.) but has also seen the Cardiologist, had a hip ultrasound, has regular speech therapy, has a regular meeting with her Early Interventionist, PT, and has been to the Down syndrome clinic.  We have appointments in the next two months to re-visit the Cardiologist, see an ENT, as well as an Ophthalmologist, and she has to get a very scary round of blood work done.  Did you know that children with Down syndrome are at an increased risk of developing childhood leukemia?  Let’s just say I’m not looking forward to that round of testing.  The blood draw alone is scary enough for me.  I won’t even allow myself to think about any possible results.  And that’s just the medical side of raising Maddie Grace, who is healthy, so I can’t even begin to think about the things that someone raising a child with Down syndrome who is not healthy is going through.  

Adam makes her laugh more than anyone!

We are also lucky in the fact that Maddie Grace is doing really well in her gross motor movements and she’s improved by leaps and bounds with her speech therapy.  Her tongue thrusting and feeding have improved so, so much in the short time we’ve been working with our therapists.  This stuff can be really overwhelming and there are days that I just feel like I can’t do it – I want to scream that it’s not fair!  And why my child?  BUT as soon as those thoughts enter my mind I look down at my sweet, sweet baby and realize there is absolutely nothing I wouldn’t do for her.  Nothing.  If you are ever faced with a challenge like this I can promise you that you will get through it, that you do have what it takes.  That’s the sucky part, but here’s the amazing part.  Maddie Grace lights up and smiles with her entire body when she first wakes up in the morning or from a nap.  She laughs out loud at her daddy all the time, they have a very special bond that’s incredible to watch.  She’s turning into quite the little fish and seems to love being around water.  She loves being outside.  Just walking out into the sunshine calms her completely.  She’s such a little stinker in that she fights going to sleep with all her might by crying out and trying to pull away from cuddles, but she’ll catch my eye during one of her little tantrums and smile so big, then fold her little body into mine, and be peaceful.  She will protest when she’s left alone in her swing, but as soon as she sees you she lights up and the expression on her face says, “well there you are, I’ve been looking all over for you.”  Her little bottom lip rolls out about 3 feet when someone holds her that she doesn’t recognize and seriously it’s the sweetest and saddest thing you’ve ever seen all at the same time.  There is no way I would ever trade any one of those moments, not one of them.  She is my perfect child, so therefore, I accept all of the challenges, and refuse to apologize for being positive, because guess what?  My reward is truly awesome.

I'm a very happy girl when I wake up!

Healing

Tonight I had a very sappy and sentimental moment. I was rocking Maddie Grace, listening to Adele in Pandora - can I pause a second and just ask why does Adele's music always bring out the sappy side of me? I love her, but man, when I listen to her I usually turn into an emotional basket case! Anyway, Maddie Grace had the best day, she was so pleasant, and very cuddly  and as I'm rocking her she keeps looking up at me and smiling. And my heart is literally melting with each sweet little gummy grin. I see the love in her little almond shaped eyes and become a blubbering mess. It's a combination of the music, the sun setting outside her windows, the constant squeaking of the rocking chair, her sweet grin and as I'm taking this all in I'm literally blindsided with the thought that I feel like I'm healing. I felt true true peace tonight.

 

 

Healing from a broken heart is a process. It certainly doesn't happen over night.  But I had convinced myself that I was fine. I pushed through every day and things have been great. We have an amazing, sweet baby. I have been fine. So I guess that's why I was so blindsided; I really thought I didn't need to heal. I had convinced myself that I was healed, but my very wise mother put it best; she said, "broken hearts heal a little at a time and as the cracks begin to fill you realize that everything is going to be just fine." Its so true. A tiny crack healed tonight and I had the overwhelming feeling that things are going to be just fine. Maddie Grace is making me a better person, she is making me whole and now I know that I still have some healing to do. Next time a crack fills I may not be as blindsided. I have lots of growing to do and sometimes growing pains hurt a little. But everything is going to be just fine.

Miracle Baby

It's been awhile!  Maddie Grace and I have been enjoying our last days together on maternity leave.  I'm headed back to work next week!  It's amazing how quickly time flies.  Believe it or not, I've been working on this post for over a week.  

Many people believe that to give birth to a baby with Down syndrome means that somehow the mother's body has failed them. But I don't see it that way. I'm so very proud of my body for carrying a baby that had a very high risk of miscarrying to term. I read a statistic the other day that said as many as 80 percent of babies conceived with trisomy 21 (Down syndrome) end in miscarriage or stillbirth. 80 percent! That's incredible. So if you ask me, my body did something pretty amazing by carrying Maddie Grace to term. 

And while I give my body a lot of credit for bringing Maddie Grace into this world, she needs some major credit. Maddie Grace is a fighter. I've always known she was going to be spunky. She thrived in an intrauterine environment that my doctors described as "less than ideal". She had cord flow issues starting at 35 weeks. But she passed every single one of her biophysical profiles and non-stress tests. And she had a ton; I was at the doctors office every Monday, Wednesday, and Friday for almost a month before she was born. In fact, she showed off at most of her ultrasounds! She didn't gain an ounce from week 36 to week 37 and the doctors decided that it was time to meet her. She entered the world 3 whole weeks early screaming her lungs out letting the whole room know that she had arrived. And as Adam and I listened behind our c-section screen he softly whispered, "see she's fine, she's crying, she came out crying."  Adam knew one of  my biggest fears was that she would have major issues transitioning after birth and that she would end up in the NICU.  But she was such a fighter and came out strong! 

It's so easy to say "life is not fair," when you are given a child with a disability. But I was reminded last week how we are so incredibly lucky to have a healthy baby girl. We were at the Children's Hospital having an ultrasound done on Maddie Grace's hips and across the hall from our waiting room was the pediatric oncology wing. Just seeing those words written on the wall above the waiting room was incredibly heartbreaking. Those words should never be used together - pediatric oncology.  I'm constantly reminded that there are no guarantees in this life.  We are given one day at at time, we are not guaranteed tomorrow, we are not guaranteed health, and we are definitely guaranteed a perfect life.  But all of that said, we're a pretty happy family:

 I wrote the other day about unanswered prayers. But today I need to acknowledge that we had so many prayers answered.  Adam and I have a healthy baby girl. We prayed above all else that she would be born healthy. We prayed to avoid NICU time and we did. Maddie Grace came home with us after three days. We prayed that God would expand our family and now we are a family of four (yes we count our fur baby!). Finally, we continue to pray that God will watch over our sweet Maddie Grace.

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.