First comes love, then comes marriage, then comes the baby in the baby carriage!
I am sure that is what a lot of women who have plans for their future may have ringing in their heads. You have this picture laid out of what your wedding will look like, where you want live, how many kids you will have and of course the perfect mother you will be. Some of those are easy you can check mark those off the list…others come with struggle and challenges. Marriage isn’t always easy, not everyone can afford their fancy dream house right away or ever for that matter, sometimes not all kids are the perfect angels we had intentions for them to be, and sometimes – – Life throws you a curve ball that hits you right in the face leaving you grieved stricken, dumb founded and worn out.
Our story up until about three and half years ago was pretty smooth sailing. We had been married for 6 years, cute little house in a good neighborhood, a bright 2.5-year-old named Ava Kate and a second little girl on the way. Little did we know she would indeed come early than expected and with “unexpected” issues that would begin to unfold over the next 6 months. See a common theme thus far? Expectations are something we put on ourselves of what we think our future should hold…which isn’t always what God’s plan has in store for us.
Sometimes I think I can picture God putting our future into action saying “Ok their first child was a perfect pregnancy and birth, slept through the night from 2 months on, bright and talking 5 word sentences by 18 months…it’s time for them to have a little more challenge in their household- this has been way too easy for them.” I am not going to lie, I like easy…easy, smooth, coasting- I think all of those words have probably been in either a Beach Boys or Eagles song and there is a reason for that. People like it….”Easy Peasey Lemon Squeezey” as Ava Kate would say.
Well with Claire nothing has been easy. Her little 3.5 year old life has been a challenge from day 2! Ok so we had one day of ease…but other than that it’s been a roller coaster of emotions, worries, what if’s and don’t let me forget the unexpected.
So in a nutshell (You can read more about her issues more specifically here
We were in the hospital for the 2nd day, the doctor was coming in to actually check on us one final time and hopefully send us home- smooth sailing I thought! When her pediatrician came in he noticed that she was doing some funny jerking movements, which she had just recently started. I asked him if that seemed like it was seizure activity to him. He whisked her away to the NICU to run some tests to figure out if we should be concerned. After a few hours of waiting- he came back to let us know that some of the tests revealed her blood sugar was extremely low and she also had signs of pockets of blood on her brain. She was flown to Cook Children’s hospital shortly after, where we started our month long stay.
Throughout our month stay at Cook Children’s we learned a lot of new medical terminology, even to the point where I was asked if I was a nurse by a new shift doctor because I had the terms down so well. About 2.5 weeks in she was diagnosed with Hyperinsulinism, a condition in which the body produces excess insulin causing low blood sugars. The blood on her brain slowly decreased and showed no signs of damage there- however per the neurologist we would not know until she started to grow into milestones, how she would cognitively develop. That is where our unexpected journey began and this became our new norm.
To fast forward some…At 5 months old, after delayed development, tests revealed Claire has 2 rare chromosome disorders, Trisomy 10p and Monosomy 9p or 9p24 deletion. In 2016 Claire was diagnosed with cerebral palsy. Now to say that these new terms made anything easier would be a joke! Not only did this “worry warrior momma” google everything under the sun (We all know we shouldn’t do that) my emotional state was well…nonexistent. How I survived without some sort of anxiety meds during this time period is beyond me. This later became a need for me when I found myself crying in my car uncontrollably 3-4 times a week by myself.
So as you can see our “nutshell” of unexpected was a big one which still holds many unknown things for Claire, her future and our family. I have realized in these past three years that is to be EXPECTED – there has to be something we know that does come with all of this…
Your strength will be tested.
Tired is a word that doesn’t even amount up to how you feel.
“Sad-Angry”, yes that is a vocab word in the emotional dictionary… You will be mad as hell some days and you don’t even know why. This consist of teeth gritting, fist flinching, ugly crying and maybe even some “WHY” sobbing all in the mix.
Faith – your faith will be the one thing you can always lean on, count on and know that it will always meet your expectations. On the other end of your faith is the one person who knows what we need, what our future holds – unexpected or not.
Grief—this is another whole blog post in itself. When we expect something whether that be in our spouse, in our self, in our children or just in life…and that lets us down – it is OK to grieve for what you “lost” or for what you hoped for. More to come on this topic…this is seriously something I struggle with on a daily basis. Not feeling guilty to grieve for a child I expected but didn’t get.
Now does all of this mean I don’t want Claire…Oh no…she is exactly what our family needed and we love her so much. God knew what he was doing when he brought her into this word and made her exactly as she is. God knew what to expect and that is what matters.
A lot of days though…
It’s just hard- not that “easy” I had expected. These feelings are normal and surely expected in a situation like this. This is one reason I refer back to my faith to help get me through those not so easy days!
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