This Week

Not too much is new in our world this week. We've been in town for a whole 2 weeks (of course, we're leaving again in a few days for more doctor's appointments - I'd hate to have to get too comfortable at home!)
Will is progressing very quickly towards walking - I'm praying for first steps as my Christmas miracle. I'm probably becoming a local lunatic as I've officially made our therapy more public this week. I was noticing that while doing therapy everyday at home, Will tended to have more tantrums & we were both getting frustrated quickly. I think we were getting rather bored despite my attempts to have special "zanco time only" toys. So- I've gone public. Now, everyday after I put his zancos on, we go to some store in town where I may buy one thing- like an avocado the other day at Albertson's- & we do therapy. He's gotten great at barely holding onto my hands & walking all the way up and down aisles. We're both more distracted & he's so social that it seems to help to have new people to show off his skills too! I've seen huge progress since we started this a few days ago. It's been lots of fun, actually, I think for both of us!
Will has also become a marathon sleeper recently -which is nice! He still takes two naps a day (usually for a total of 3.5-4 hours.) This week, however (possibly thanks to the cough medicine he's on or perhaps a growth spurt as he's eating me out of the house), he's been sleeping up to 6-7 hours a day! And, when he has slept more than 3.5 hours in one nap, I've been waking him up! And, he continues to sleep great at night! Wow- it's been AMAZING! (And I have no idea why I haven't blogged more!)
We also got some great news this week. I don't know if other moms of special needs/differences kids struggle with guilt but I'm guessing by virture of the title, "mom," that they do. I have asked every single doctor we've ever met with if there is anything I could have done to cause Will's syndrome. I have spent countless sleepless hours at night pouring over the few articles I can find about his syndrome searching for some cause. The bottom line is that every single doctor & article have always maintained that this was sporadic- it just happened. The other bottom line (can there be two?) is that it doesn't really matter- I love him the same regardless. However, the mom part of me remains scared that some day they are going to discover something along the lines of, "every 1.5 millionth woman who gets a pedicure while pregnant will have a baby with hand and feet differences." And, I will be that woman & will live with great guilt because I got a lot of pedicures! (One time, I even paid $5 just for the foot massage as I had already had my nails done previously that week!) So, last week, while reading some articles, I found a possible link to some syndromes (not Will's) between over the counter common medication and that syndrome. I hadn't taken the exact same medication but a similar one prior to becoming pregnant & began to panic- what if it had remained in my system somehow & while they hadn't linked it to Will's syndrome. I ransacked my medicine cabinet but had long since thrown it out - I couldn't be 100% sure about the type I took - what if it had the bad ingredient in it? What if?!?!? What if's are not of God! Satan was completely attacking me, I think. Reagan was out of town & I called him in my panic sobbing. I just knew I had finally found "it." I later shared this with my mom who reassured me that while she didn't think it was connected, even if it was, I wasn't guilty as I hadn't knowingly caused it. My response is that it didn't matter- my responsibility was to this baby - I am his mother! I quickly emailed one of our geneticists with my questions and my fears. Thankfully, she responded the very next day & relieved me of any guilt- there was no possible way medication taken prior to conception could have crossed the dna of the baby - especially since there was not a baby yet! Moreover, the syndromes it had been connected to were not related to Will's. The cause of Will's syndrome is sporadic- there is no cause that can be found or even a gene that can be found - it just happened. Moreoever, those women in the study were women who had taken the medicine over a period of time while pregnant & well into their first trimester. I printed off her response with tears flowing & showed it to Reagan. I don't know why this matters or even why I share it except that those of you who are mothers can probably relate to this on some level. I was so careful in my pregnancy - I wouldn't even take Tums or Tylenol (mostly because I am super stubborn & for some stupid reason decided I would set a personal record against all medications for 40 weeks. I didn't make it, by the way, as my ob put me on tylenol pm during the diagnosis time to help me sleep.) I didn't eat the cheeses, deli meats, hot dogs, sausages, cesar dressing, mayo, fish, etc. I am grateful for my caution - I'm sure if I had not been so careful I would have even more doubt and guilt. I am also thankful that Will's syndrome does not have a specific cause. When we first found out about his hands and feet, we agreed that even if we could be tested to determine whether or not we were carriers, we didn't want to do this as we didn't think it would be healthy for us to know- we didn't want the temptation to blame one another. It turns out that this isn't an issue for us. My heart goes out to women who do know a cause for their child's syndrome and who may have had to deal with a great amount of guilt. I am thankful for a God who can relieve us of our guilt through his grace. I am also thankful for a good lesson on Who is in control here & with our babies. Yes, I do believe we are responsible to some degree for their health while we carry them and we should certainly take that responsibility seriously. However, despite the fact that we are their mothers, we are not the Creator. We are not in control. I am not in control & God designed Will EXACTLY as He intended. I've read Psalm 139 so many times over Will it is ridiculous that I don't use it to remind myself to quit trying to be a martyr. Guilt is not of God. He formed Will in my womb - He knows what He is doing. I should just relax & let go of my control issues.
On another, completely unrelated matter-
I recently read an article about a certain celebrity who had a baby this year. Shortly after birth, his daughter was diagnosed with a terminal (although she could live awhile with it) disorder. At 5 weeks old, the doctors recanted their diagnosis and she remains a healthy baby. The celebrity mentioned in the article that he chose not to allow himself to love that baby for 5 weeks because he didn't want to become attached to her and then lose her. He didn't want to suffer the rest of his life.
I struggled for days with an inner battle after reading this article. A part of me remembered my personal committment to not judge other parents. In parenting a child in unique circumstances, I've quickly learned that the books generally don't apply to us & often even the best intentioned advice doesn't apply to our lives. Sometimes, it might apply but we have choosen to go a different route with Will due to unique factors like travelling, appointment times, our desire to give him extra cuddling prior to surgeries, etc. I've also struggled with guilt when I've gone against the norm or against the books... maybe I have a "guilt complex." So, I've learned from firsthand experience that unless I know all of the factors on board regarding a parent's decision, I really shouldn't judge them. (Of course, I'm not always good about following my own personal rules!)
So, back to the celebrity. I stuggled because I didn't want to judge him - I am not walking where he is walking. However, as a mother of a child who at one point we were not sure if they could survive, I can't imagine choosing to not love him out of my own selfish desires. Are you kidding me?!?!? My heart broke for that little girl - does she have to be "perfect" to "earn" her father's love? Does he not realize that just because your child is healthy doesn't mean you're guaranteed to outlive them or that you are guaranteed freedom from pain or heartache?
In Boston we had our first abortion conversation with a doctor. A doctor actually recommended we consider abortion in future pregnancies were a child to be diagnosed with a syndrome. The doctor used the term, "fetus," which I consistently corrected with, "baby." We quickly informed the doctor that that was not an option for us - no way! I also asked the doctor to look at Will & I told her we couldn't imagine life without him. I told her how perfect & how fun & how wonderful he is & how much we love him! She maintained her position which broke my heart for other parents that may not be so set in their ways - how can she work with special needs/differences kids & their families & not see the blessings they are to their parents? She should know better than most how much more full life is when you are privileged to parent a child with differences! I recently learned that approximately 80% of women whose pregnancies are diagnosed as possibly having something "wrong" will choose abortion! 80%! I can't even fathom that & I so wish I could share with those moms the value and joy and fullness of life that comes from raising a child with differences.
So back, once again, to the celebrity dad. I don't even know why I share all of this except that it's been on my mind lately as I consider different things in life. I want you, my readers, to know how much we dearly love Will. His syndrome is not who he is but it is a part of him & we love him just the way he is. We can't imagine life without him. We are truly blessed by him & also by family & friends who have choosen to love him. Thank you for not being like celebrity dad- choosing not to love our son because he is different as somehow that might affect your life negatively I suppose- thank you for choosing to love him.
Blessings to you!
Pictures & a video coming soon!