“Down syndrome is only the background in our life, not the scenary.”
Ahhh December. December is a month filled with magic and excitement. December has an energy to it unlike any other month. For me, December has always been extra special as it holds my birthday within it’ s calendar and now December holds Lily’s birthday as well. On December 2nd, Lily turned two! Yes, December is a beautiful month filled with blessings and memories but there is a darker side to December.
As joyous as a birthday celebration is, there is another side to Lily turning two. Her turning two also means an onslaught of doctor appointments, tests and evaluations. December is when we must face Down syndrome head on.
A brief recap of December’s past:
Dec 2011– Lily was born and we juggled being new parents with a preemie and Down syndrome diagnosis all at once.
Dec 2012– We were waiting to hear back if Lily had bone and/or liver disease as some of her test results came back abnormal.
And here we are Dec 2013-
Now before I come off as a negative, glass half empty type of person, let me say that as a parent to a child with Down syndrome, it is not really a matter of IF she will have some variance of medical problem but rather WHEN and WHAT. So my reluctance and grim outlook on doctor appointments and test results is justified or at the very least, understandable. So off to her dr we go and off to face Down syndrome in its’ many forms…
Now contrary to what many may think, we do not actually talk about Down syndrome every day, we don’t really even think about it most days, and sometimes we even forget about it completely. As Lily is getting older, I admit it is harder to forget about DS but it still remains only a background setting to our lives, not our scenary.
So when the very first thing I must do at the dr is fill out a developmental form for average 2 year olds, I feel the all too familiar, icy feeling of Down syndrome coming into the forefront of my brain and slapping my conciousness around. This time, I could harldly answer yes to any of the items listed. The only area I could answer yes in was in her problem solving skills. Although I am not blind, nor ignorant, I really had no idea just how behind (delayed) Lily is in her motors and communication. It stung.
Next up was her regular pediatrician evaluation and discussion. I love her pediatrician and we always chat about the right course of action for Lily in her whole health. We made a plan and proceeded forth with the lab work.
Lily has had her blood drawn plenty of times and I am always in awe at how well she handles herself. She did not disappoint this time either. This time her brother Oz, now 5 months old, was with us and he was very unsettled by the experience. I got my first glimpse of what an amazing brother he is and will be- as Lily cried, he began yelling and even growling at the techs!
—Round One of appointments is done! Now we wait for the test results.—
Next up, Lily meets with a developmental pediatrician. She is wonderful too and is helpful at looking at the overall picture of where Lily is and how she is doing. Since medically we are waiting test results, we focus more on development.
Lily isn’t walking.
Here is where I receive another little smack from Down syndrome. Lily’s left leg is severely weaker than her right. She is asymetrical. Her asymetry was more likely due to her being born early- the vascular connectors in her brain were not developed yet. In a typical child, they could overcome this quickly with just a little PT help. In a child with DS, it means she must now triple her efforts and it will be four times as hard for her to walk. 😦
Lily’s inability to walk stirs up all sorts of emotions within me. Some I prefer not to share and others I just don’t really understand. Will Lily walk? Yes, most likely. So why do I care that she can’t walk now? Well, I guess I am just like every other parent, I hate that my child is delayed in something. I hate that she wants to do something but can’t. I hate that all of her friends can walk except for her. I hate putting on a happy face and agreeing that she will walk in her own time and yes, she is an excellent crawler. I hate that I feel this way at all. But I do. And now I hate that Down syndrome is officially creating a barrier for her.
So I pull up my boot straps and now we are going to PT 4 times a week as well as working harder at home. (This is in addition to Speech therapy 2 times a week) Holy crap.
Now here is where my heart is lifted. Lily is currently testing right on time, if not a tiny bit advanced, in her cognitive skills. That means she is smart. Every parent wants to hear that, I needed to hear that. My daughter is an excellent problem solver and does beautifully in social situations and pretend play. I am having an interesting experience of emotion as I write the paragraph above and then this one- a complexity of feelings are swirling around me and I feel completely emersed in the insanity of the happy/sad paradox I am in. Ain’t parenthood grand? 😉
As for the less dramatic but equally important information: Lily is speaking at a 12-15 month old level, she is only mildly behind in her fine motor (nothing anyone is concerned about) and advanced socially.
So that is our plan for her developmental delays- more therapy! We can do that!
Back to the medical: Lily gets tested for thyroid every 6 months to a year. 60-70% of people with DS have a thyroid problem and take medication for it- we know several who already have begun treatment. Although it is not a guarentee that she will have it, it is likely. Every year she gets tested for Leukemia. Children with DS have a higher risk of having leukemia and that risk never goes away- she will have a CBC (blood count) done for the rest of her life. This time we requested she be tested for celiac disease too- it can be common with DS and she seems to get red cheeks after eating grains. (I read somewhere that that is a symptom).
Results are in!
No Celiac Disease!
Elevated TSH (Thyroid Producing Hormone)- but normal T2, T3 (thyroid hormones). This may or may not mean anything. We are now waiting on the Endocrinologist we saw last year to review the results and decide what he would like to do.
So basically- She’s HEALTHY!!! (Phew!)
As I look at my little girl, I see so many things. I see big blue eyes, I see a fierce independent streak, I see a drive to accomplish whatever she sets her mind to, and I see an inner beauty that together with her outer beauty makes her quite striking and amazing. As she gets older, I also see Down syndrome. Down syndrome has shaped her eyes into an almond mold, made her ears and nose small, created smaller bones and a shorter stature, made her have to fight and struggle for everything she does, it is respsonsible for her inability to walk, created a frustration in her that is intense and stripped her of her confidence around groups of children.
Down Syndrome is not who my daughter is, it is not a persoanlity trait, it is a barrier that holds my daughter back. Sometimes I imagine having a sword fight with Down syndrome. Although an intangible thing, it is my foe and it hurts my daughter.
I do not love Down syndrome. I am not grateful for Down syndrome. During the month of December, amongst all my joyous celebrations I also wage battle with an enemy.
A battle that Lily and I are determined to win everytime. Lily just turned two and she won this battle over Down syndrome!
Happy Birthday little girl, shade of my heart- you are healthy and beautiful and we love you so very much!
It just never ceases to amaze me how much we go through the same emotions over the opposite development in our children. Spencer has shown some advanced skills in some cognitive development, but I feel that Lily literally leaves him in the dust! But Spencer can chase Sasha all over the house. Physically / motor skills, he is doing great. But I’m right there with ya, Momma. It stings when I see a list of typical milestones he would have reached if he were typical. Much love to you, thank you for sharing the real deal.
Also, I have all these things on my list. I was not aware red cheeks were a symptom of celiac. Spencer has had red cheeks for a couple months now… since I got him to start eating more food.
Let the worrying begin…