Microcephaly

Sharing our blog about our desire to adopt has opened up a flood gate of questions for Jesse and me.  I am more than happy to tell people our reason for wanting to adopt, as it is a valid question considering we have two biological children. Ethan (our oldest son) was diagnosed shortly after birth with microcephaly.  

According to the text books (or in this case, the internet) Microcephaly is a neurodevelopmental disorder.   Some academics advocate defining it as head circumference more than 3 standard deviations below the mean for the age and sex.  Microcephaly may be congenital or it may develop in the first few years of life. The disorder may stem from a wide variety of conditions that cause abnormal growth of the brain, or from syndromes associated with chromosomal abnormalities. In general, life expectancy for individuals with microcephaly is reduced and the prognosis for normal brain function is poor. The prognosis varies depending on the presence of associated abnormalities.

In terms that everyone can understand, Microcephaly means small head. Small head = small brain. Small brain equates to a myriad of developmental delays. For Ethan, at 8 ½ years old, his head is the size of a 6 to 12 month old. People don’t usually recognize it, however, when you see him next to Theo, you can easily identify it. While he is significantly delayed in speech, fine motor skills, and general academics, he is on the high functioning side of the spectrum. We feel unbelievably lucky that he is able walk, talk, and feed himself.  He is amazing and we are so blessed. He has had to work so hard for everything in his life that it has taught us not to take things for granted!

Microcephaly can be genetic. We did extensive genetic testing before we had Theo. We couldn’t prove if Ethan’s case was or was not caused by genetics.  Theo turned out perfect. However, when Theo was two years old we met with the leading research geneticist in the field of microcephaly, and he told us, flat out, not to have more children. If it was a genetic cause, there is a 1 in 4 chance it would happen again.  He said we shouldn’t look at the situation like there was a 75% chance everything would be fine, but instead; that there was a 25% chance something would be severely wrong.

For anyone wanting more children, that was absolutely heart breaking to hear. Jesse and I had just a couple of months earlier come to the decision that we did, in fact, want more kids.  So, three years later, here we are! We want to expand our family and we feel like we still have so much more love to give!

 

 We are ready for our little girl! So much fun decorating the nursery!

Go to around second 38...  This is totally me. Jesse is continually embarrassed by the fact that I am always talking/holding/cooing to other people's babies. People I may not even know. Case in point: 

I don't even know who's baby this is. Seriously. Never met the Mom before this birthday party. I do stuff like this all the time.  I can't help it. I blame my Mother.  I hope I am not alone.  Embarrassing or enduring? Well you choose. I am probably too busy playing with a random baby at Target.

You may not be able to tell from this picture, but these two little guys are beyond excited to have a little sister. Ethan has just been cracking me up daily with the things we need to buy for "our baby sister" and especially with the things he is going to "teach my baby sister." Namely karate. Also to say "Mama" and "Dada", and to dance. He is hysterical when he speaks about it. I have to giggle silently because he is so serious. He has also told me she is going to be a "ninja baby sister" and that we have to get her a ninja costume like he and Theo have. Man, you couldn't ask for any more awesome older brothers. So far we know our daughter will have mad ninja skills, know how to call for us, and to dance along with the family. We are set!

In Search of Our Daughter

I have always known I would have a daughter. When I was first pregnant with Ethan I was fine with my first born being a boy. “A protector of his little sister” I thought. Then Theo came. I remember that much anticipated twenty week appointment to find out what we were having. Anyone who knows me knows I would never be able to handle the anticipation of a surprise birth. I am far too type A. I like to have everything organized and ready.  That appointment came and I heard those words “it’s a girl!” Imagine my surprise at thirty two weeks when the doctor said “um, wait a minute…”  I said goodbye to all the pink things we had collected.  I packed them up and put them away, for perhaps future use.  When we were told not to have more children by Ethan’s geneticist two years later I was crushed. Jesse and I had just passed the threshold where we had decided we did in fact want more children. It took us two years to reach that conclusion. Our lives changed in an instant. My dreams of dance recitals and mommy and daughter pedicures seemed to disappear.  Now, three years later, I can’t stop thinking about our daughter. I thought the longing would get easier as time went by. It didn’t. As the boys got a little older and I saw Jesse doing “boy” activities the dull ache was definitely still there. As I starting seeing my nieces and my friends’ daughters growing up it became stronger. I brought the idea up to Jesse about adoption, but I never pushed. I didn’t want to have to convince him. When he agreed to move forward with the process several months ago I was ecstatic.  I envisioned pink tutus and French braids and slumber parties.  We talked with friends who have adopted and immediately chose Christian Family as our agency. We want to adopt locally, or at least domestically. However, we were told we were #9 on the waitlist. They only work with twenty four families at a time. They told us they have a family that has been waiting eighteen months for a little girl. I was a little discouraged. I said “what can we do while we wait?” “Nothing” was the answer. That didn’t sit well with me. I am more of a doer than a waiter.  So we started on the nursery. Then we waited. We have now finished the nursery. We have waited some more. I shopped for baby girls clothes. We wait.  I try to explain the concept of time and waiting to two very excited boys who can’t wait to be big brothers. Today we met with another agency that does not have a wait list. We went with hopeful hearts that perhaps the time would move faster. We left with heavy hearts feeling extremely discouraged. We were told since we want a daughter; we should expect an even longer wait. Boys are adopted out two to one. Birth mothers tend to think that parenting a daughter is easier. Also the fact that we already have children will be a real detriment. Birth mothers want their baby to be an only or first child. We were told our wait would realistically be three to four years for an infant daughter. I am feeling a little beaten down, but not out. I know our daughter is out there. We just haven’t met her yet.  In my soul, down to my core I know I was meant to have a daughter. She is already in my heart; now I just want her to be in my arms and our home. The intake coordinator said our best chance for a child is to find a unique situation via word of mouth. Perhaps you can help. Do you know someone who is pregnant and thinking about adoption? Do you know someone who knows someone? Please tell them about our family. Give them our information. Ask them to reach out to us. We will be waiting!