On November 17, 2008, I stood in my bathroom and almost passed out when a second pink line actually appeared on the pregnancy test.
On November 17, 2011, I sat in a room at a pediatrician’s office and bawled my eyes out to my son’s doctor.
It’s crazy what can happen in three years’ time. None of us really have any idea what is around the bend of life at any given moment, do we?
I haven’t been around much lately on my blog because my heart has felt so heavy and my thoughts have felt so clouded and I just haven’t felt like me…at all. For about ten days, I felt like I was walking around with a dark cloud of heaviness over my head. Everything felt black…and foggy…..and sad. I thought for sure I was getting a stomach ulcer, I had no appetite, I felt like I couldn’t think straight, and the tears just kept on coming.
I’ve shared a little bit on here before about my son’s food struggles since we moved to Connecticut about 15 months ago. What we thought at first was maybe super-picky eating, maybe stubborn-ness, maybe do-we-just-need-to-be-tougher-parents? has slowly and surely proven itself to be much, much more than any of that.
Our boy has come to the point where we can’t help him on our own anymore. We’ve done everything we can do. Saying that sentence out loud at the doctor last Thursday was what really got the tears to flow.
Simply put – and it’s anything but simple to live out day by day – our son has some moderate to severe sensory issues. These issues really come to a head with food, because Luke has to eat three times a day and the issues come frequently to the surface there. But it also goes way beyond food. It’s crazy to look back at the baby journal I kept for him and realize that all the little things we thought were “quirks” of his add up to a big picture of a sensory disorder. Things like…..inability to breastfeed, freaking out when a sticker or band-aid touched his hand, intense fear of grass on bare feet…the list goes on and on and on.
Add to this innate “sensitivity” (maybe genetic, even?) a major life change during a crucial point in his development, and you basically have a recipe for some serious issues.
My sweet boy frequently gags on food, frequently spits out things he can’t process with his tongue and can’t swallow, and occasionally will vomit it all up. He screams in fear when a new food even gets on his plate, never mind trying to put that scary thing in his mouth. His tolerance for new foods and textures is getting smaller, not larger. Where most kids at almost two and a half are slowly eating a wider and wider range of foods and textures, my son is losing foods all the time that were once previously enjoyed. My son now eats 17 foods (TOTAL), plus milk, water, and juice. We recently lost two more of his favorite foods.
Chris and I have been researching and reading like crazy people. I can’t explain it but about two weeks ago something finally “clicked” that this all was really not.normal.
I don’t have the brain power/mental strength to fully explain all that’s really going on with my sweet boy right now. Over time I will be documenting his story here so that others can hopefully find help and information in my posts. There is a serious lack of information for parents going through this….and by “this” I mean any number of things that he could be diagnosed with: food neophobia, sensory food aversion, pediatric feeding disorder, and sensory integration dysfunction are four of the possibilities.
His pediatrician, after two visits, agrees with me that there is some serious stuff going on here. Luke, thank God, has been referred to the pediatric feeding team at Connecticut Children’s Medical Center. There is a group there comprised of a occupational therapist, a speech therapist, a dietician, and a behavioral psychologist that all work together as team to help each child. I truly believe those people can help my son. Now we wait for the referral to be processed….and wait to see if insurance will cover the evaluation and subsequently weekly therapy sessions.
Last November, I cried and cried because we were living with my parents and there did not seem to be a house in our near future.
This November, I have that long-prayed for house, but I’ve been crying and crying because I just wish my son would eat yogurt…..or spaghetti…..or pizza…or eggs…or applesauce….or really just something – anything!!!! – new or old that he used to love.
What a difference a year makes.
So what am I left with?
Life will always throw curve balls. Life will almost always present sadness in some form. And there will almost always be the death of certain dreams and hopes and expectations.
I can choose to bawl my eyes out over the fact that there is not ONE Thanksgiving food that my son will allow himself to eat on Thursday.
I can choose to let myself become overwhelmed with despair at the nutrients my son is most likely lacking in and the long, long, long road of therapy ahead of us that may not even by covered by insurance and also (potentially) may not even end up working for him.
I can choose to be overcome with jealousy when I hear parents talking about the great foods their kid eats or see a toddler happily scarfing down normal food at a restaurant.
I can choose to be overwhelmed with sadness and fear at the thought of Luke’s future – how will he go to birthday parties when he won’t touch pizza or hotdogs or french fries? How would he go to summer camp? What if we keep losing foods? What if he continues to eat less and less? Will he always be tiny, even as an adult, because of the nutrients he’s not getting now as a toddler? What if, what if, what if, what if.…….
A normally-developing toddler, for whatever reason, is simply not the path that God has chosen for our family – at least not at this present time.
I wish more than anything in the world right now that it was, but it’s just not.
SO. What can I possibly do?
I CAN CHOOSE to “fix my eyes on Jesus” – as my wonderful husband reminds me so often to do.
I CAN CHOOSE to put my faith in my amazing, all-powerful God and not my faith in Aetna Insurance and the pediatric feeding team at Connecticut Children’s.
I CAN CHOOSE to count my blessings – a house that meets our needs so well, a beautiful, happy boy that brings so much joy to us and to others, a beyond-amazing husband that provides me with so much laughter and incredible spiritual advice, the hope of heaven and the gift of the Holy Spirit.
I CAN CHOOSE to be thankful for the health that my boy does have – we have several friends whose kiddos will be struggling with health issues for the rest of their lives, and it is definitely possible that with therapy Luke can be “normal” (I use that word loosely) someday.
I CAN CHOOSE to make the best of the situation….and realize that my blog can hopefully be a platform to help other mommies and daddies out there who feel like they are going crazy and at their wits end over what to do when their sweet kiddo just doesn’t eat like all the other kids do.
I CAN CHOOSE to look beyond tomorrow….and when those dark thoughts enter my mind and make my stomach churn…thoughts that this will never change and Luke will keep getting worse and that he’ll never have all the nutrients he needs….I CAN CHOOSE to renew my mind and replace the bad thoughts with good ones.
It’s definitely not easy, but I am not stuck in despair.
This week of Thanksgiving – my favorite of all holidays in the year –
I CHOOSE JOY, and I CHOOSE JESUS.
Because without them, I am nothing.