Monday, September 10, 2012


From time to time, I try to ask myself a few questions: Why do I write? What is the goal of this blog? Is it fulfilling a purpose?

It's hard to compare this little corner of the blogosphere with such giants as Enjoying the Small Things and A Perfect Lily. Kelle and Patti are both amazing women, and they are accomplishing such fantastic things for the DS community. And those are just two of many wonderful blogs and advocating mamas out there, and I have to wonder... why am I here?

But if you are here, then I am advocating to you, and hopefully I'm encouraging you. My goal is to share life--real life--with you. If you're a mama, especially to a little one with DS, I hope that you can be encouraged in both the good and the bad. That's why I am here: For you. For each person who comes here. To serve.

Today, though, I am going to twist it a little bit. Today I am here for me. Or more specifically, for Roo. Goodness, that sounds so serious. Really, all I'm trying to say is that I would like to make use of my network here to ask for a little prayer for my boy.

As God has taken us on this journey with Roo, I have learned so much about taking a deep breath and letting go of comparisons and expectations. That's not to say that I don't *have* expectations of Roo--and my other kiddos--but just to say that I am learning to work and hope while trusting God for the results and not stressing myself out about them as much.

Still, I have been reminded lately of the power--and the necessity--of prayer. If Lamb comes to me 20 years from now and says, "Ever since I was 3 I have been DREAMING of being an Olympic swimmer. I trusted that you would get me the lessons and training I needed for that, but you never did", I would say, "Why didn't you tell me?" Trust is good, but there needs to be two-way communication. (OK, I know that the metaphor is a little shaky because God DOES know our hearts and our desires, but He still wants us to come to Him... Just... go with it, will you?)

So it's time to pray, and now I am selfishly taking this blog over for today and asking you to join me. There are two specific concerns that have been on my mind for the last several weeks, and I am hoping that you will help me storm the gates of heaven on his behalf.

The first is... well, his hair, I guess. Early this summer, Roo's hair started thinning in spots. I didn't pay too much attention to it at first--in fact, I thought I was imagining it--but it gradually became more and more pronounced. Now he has lost so much he looks like he's got a mohawk--it's nice and thick on top, but he's bald almost all the way around the sides. My concern is NOT for his hair, I am not that vain. But what I want to know is WHY. Why is it falling out? I took him to the pediatrician a few weeks ago and got NO help whatsoever. It is possible that it is an auto-immune disease called alopecia--in this case, it doesn't do anything but cause hair loss, which is fine. I'm concerned, though, about Roo's diet--or more specifically, his staunch refusal to eat anything that resembles fruits, vegetables, or meats--and worried that the hair loss could be indicative of a nutrition deficiency. Or maybe it's something else entirely. I don't know. I want to know. I want to fix it. I want to be sure that there is not a bigger issue under the surface.

Second: movement. Specifically, he's not walking yet. He's 30 months old now, and he cruises furniture and stands independently and will even walk behind a push toy; but he has taken only a couple of independent steps (one each time). At this point I think it has more to do with stubbornness than ability, but the fact remains: he's not walking. At his last PT appointment, his (very kind and not-wanting-to-stress-me-out) therapist mentioned that he is reaching the upper limit of the normal range for kids with Down's. I'm trying not to stress about this, I'm really not. But you have no idea what an impact it would have on my life if I could just get this boy to use his feet once in a while.

So there you have it, friends. Will you pray with me? For me? For Roo?



Meg said...

I will, friend. I will pray. Love you.

Becca said...

Sending good thoughts!! However, I have heard that alopecia is relatively common in people with Down syndrome. It may just be a product of the extra chromosome. And with walking, I have known several children with Ds who didn't start walking until just about their 3rd birthdays. Hang in there! He'll get there! (((hugs)))

pathsofwrighteousness said...

I'll be praying. Have you had his thyroid checked? Not only TSH, but free T3 and free T4 as well. Hair loss can be a symptom of hypothyroid (and sometimes a level drs say is normal is actually low for our kids.) I have lots more info on this if it's pertinent for you. Wishing you and your little roo all the best! ~Jill

Wren said...

I know all about alopecia and it does sound like that is a very good possibility or cause of the hair loss. Several years ago I nannies a little girl who around the age of 2.5/3 started loosing her hair in random places on her head, mostly the front/top and several smaller patches in the back and on the sides. She never lost all of her hair but a good amount of it. Summer required hats at all times if outside and lots of sunscreen. I do remember we use to put a topical cream on the bald spots and shortly after her 5th birthday her hair started growing back. She's now 16 and has full/thick long hair and has never had a recurrence. It may be worth a trip to the dermatologist for a second opinion! Good luck with the walking, I hope he decides that walking is fun soon for both you and him! :)

Suttle said...

Hey I would definitely check out the thyroid and if it is the cause avoid soy at all cost. Also I had a similar experience caused by arsenic poisoning from the chemicals in food and cleaners. I did a hair analysis for about $70 earlier this year to find the arsenic and also some mineral deficiencies and after 3 months of detoxing and supplements my hair has been growing back. I have 3 inches of hair sticking up all over my head now it's lovely! Also if you want any nutritional tips let me know I've got tons.