It makes me sick to my stomach when harsh reality hits that she needs to be that close to her coloring book to see the details of what she’s doing. It makes the idea of vision loss loom too close and realistic for comfort.
It makes my heart sink that the doctors she visits are never-ending, and that she needs glasses (a tell-tale sign of the vision loss that seems to be inevitable with her syndrome).
I usually make the things surrounding Lucy seem lighthearted and fine here on this blog because mostly they are. Yes, we have a daughter with some serious health issues that have and will affect her and our family forever after. But we realize that these things are really an amazing blessing to us. Sure, they’re tough. But we have already learned and grown by leaps and bounds having Lucy around. We all adore her with all our hearts.
But I’ve had a tough time being the eternal optimist with all that goes on around Lucy lately.
It all started with trying a new doctor to help make sure she was getting every nutrient and vitamin possible to help her growth and development. You see, we have a friend with a child with the same syndrome who is doing phenomenally well. She is not overweight and she is calm as a summer’s morning. Her parents felt that the reason she was doing so well was because they had her on these supplements that have made a big difference.
Lucy was doing fine at the time, in fact, actually progressing quite well. But Dave and I don’t want to leave any stone unturned of possibilities to help Lucy reach her highest potential. So although it took us a year searching for the “right fit,” we found a doctor who could test her “levels” and make sure she was on track with what her body needs. After some testing we found that indeed, Lucy’s body is not on track (duh, we already knew that), but we started her on some supplements hoping to further help her already great progress.
Instead of helping Lucy progress more though, the supplements drastically changed her moods and disposition. She regressed back to her constant tantrums and non-communication. At first we didn’t put the equation together that it could be the supplements causing the problems. I mean, who would have thought that vitamins and herbal supplements could make that big of a difference? But finally we matched together the timing of all the regression and the introduction of the supplements and found out that Lucy was going through what they call a “detox” period.
Now, who knows how long “detox” lasts…I’m sure it’s different for every child. But the problem is that now we can’t seem to differentiate between what is “detox,” what is normal four-year-old behavior, what is just part of feisty “Lucy”-ness, and what is part of her syndrome. We can’t make heads or tails of what is working and what isn’t. And it’s thrown us into a tail-spin.
We are still doing the supplements (we want to give them a good, valiant effort), but sometimes I wish we would have never gone down this road.
Of course, if we didn’t come down here, we’d always be wondering “what if” when we looked back.
I want to clarify that in no way am I saying the supplements are bad, or the doctor is bad, or that we are sad we tried something that has caused such an upheaval. This turn in our “help” for Lucy may prove to be the best thing yet. But right now in the midst of it all it just seems dark and dreary. We don’t know which way to turn. What works for another child even within the same rare syndrome category may not be the right answer for Lucy’s needs. Each case is so completely different.
We went to one eye doctor while Lu was in the midst of the the worst of her “detox.” He told us she needed glasses but I was skeptical for a couple reasons: 1) I didn’t want to believe it, and 2) how in the world could he have known that she needs glasses when he only got the chance to look into her eyes for less than a fraction of a second in between her crazy tantrum antics?? So I took her to another doctor for a second opinion. He also recommended glasses but a different type and at a completely different prescription.
It makes me wish I were an eye specialist.
In the meantime we have found another doctor who is of completely different realm of thinking who’s bluntness and theories I have fallen in love with. The good news is that in the little interaction we’ve had with him he has given us a boost. It’s like a little pat on the back to validate all that we are doing, and that feels good. The bad news is that he and his practice are dissolving because of all the health-care cuts. It just seems that there are dead-ends everywhere we turn.
But what Dave and I discussed on our way home from our last doctor appointment is this: It’s time to buckle down and take all this information we have gathered from the myriad of different doctors we have visited and experiences we have had, and become the experts we must become. Sure, we have already utilized our own sweat and tears to get this far already, but we realize we have a long way to go.
A lifetime in fact.
And all that seems so daunting.
Sometimes I just feel like I want to be done with the fight. I want to take a rest. I’m sick of insurance calls. I’m sick of doctor’s waiting rooms. I’m sick of filling out endless doctor forms. But as Lucy’s parents we are the only ones who know how to fight the fight in the first place. We are the only ones with the right pieces (that we’ve gathered from far and wide) to put together Lucy’s puzzle because we adore this girl with all our hearts. The truth is that no one is going to miraculously come put things together for us. It’s the same with our other children. They all have their own puzzles. But Lucy’s looms largest in front of us on a day-to-day basis.
The reason I’m writing this is not to say “woe is me” nor to compare what we deal with to things others do that seem so much tougher in comparison. Everyone has their own things they go through whether they be on the surface or deep down inside. I guess what I’m trying to get at is that we all need to become experts in the individual issues that comprise our own unique circumstances to come out triumphantly from the tough things that come our way.
I’m writing this because I want to be able to come back here in the future and remember the struggles. Maybe it will all be more smooth-sailing some day. Maybe we will wonder what all the fuss was about. I want to remember that although we fail on a regular basis, we are struggling and trying our very, very best to help this girl of ours. We don’t have all the skills to help her, but we’re trying to surround ourselves with people who do.
After the motherhood retreat I went to last week two moms came up to me who both have children with special needs. One asked me with tears streaming down her cheeks when the pain and sadness would go away. When will she ever be able to just go to the grocery store or the park or the school without some little inanimate thing reminding her of her son and making her cry? I stood there in the swell of women around us laughing and talking in their own corners of the world and my mind was blank.
Because I don’t know the answer.
We’ve known about Lucy’s syndrome for over two years and I still cry on a regular basis. A friend won’t want to play with her and it’ll rip my heart in two. I’ll try a new dress on her that makes her look bigger and the prick behind my eyelids will start again. I’ll try to lug her 52 pounds of kicking-ness to the pool for her swim lesson and want to bawl that she’s just so different.
But I don’t. I go right on doing what needs to be done. Because no one else is coming along to do it for me and I have to be strong for her. For my other kids. For Dave.
To those sweet, good-hearted mothers dealing with some of the same issues as we are, I’m sorry I don’t have an answer. I assume it will be like this forever. There will probably be something almost every day to remind us of what our children don’t get to have, or don’t get to do, or don’t get to understand. There will probably be little reminders just as often of things that have changed and will change in our family because of the unique issues we face. Our children will be different. Our husbands will be different. We will be different. There will be lots of bad, dark, sorrow in our future.
But I am convinced that the light will win and will drown out the darkness. The good things will outweigh the bad. The things we have learned from Lucy have changed us all in ways I would never, ever trade. No, I think we’d all agree that we’d take her and her bundle of issues again any day of the week, even with all the heartbreak. Because she has taught us things we could have never learned any other way. She has taught us to appreciate things we may have never noticed without her. And she has made us stronger and more compassionate in so very many ways.
Even through the sadness that comes along with the job, she has given our eyes a unique twinkle. I’ve seen it in each of my children and in my husband. And I’ve felt it in myself.
And that twinkle that lights up the room when she smiles makes it all worth it.