My Daughter, Now A Willing Blood "Donor"

One of the medical concerns that can accompany Down Syndrome is problems with the thyroid gland. In our daughter's case, early blood tests revealed a slight hypothyroidism, and so she is on a daily thyroid supplement. As part of continuing to monitor correct dosage, twice yearly blood tests were required. This is where things got really interesting.

Image courtesy m_bartosch / FreeDigitalPhotos.net

Like many people (and kids especially), our daughter did NOT like being poked with a needle to draw blood. I have so many memories of having to wrap her in a sort of make-shift body restraint, and even then, needing 1 or 2 additional nurses to keep her still enough in order to find the vein and get the blood. All the while, Erin screaming blue murder. I recall one particular incident when, after getting her back to the car, I noticed hundreds of tiny red dots on her skin around her neck and face, the micro blood vessels in her skin having ruptured from the intense straining she did in trying to escape the scary procedure.

Over the years she has gradually become more used to, and more co-operative with, the process of having a blood test. Progress in this came to it's ultimate culmination last week when I took her for a blood test at a local clinic/lab. After presenting the receptionist with her health card and requisition form, my daughter was instructed to go to the back room and have a seat in one of the chairs. I instinctively got up to walk back with her when a crazy idea entered my mind. I quickly asked Erin if she wanted me to come, or if she wanted to go by herself. She raised a hand to stop my advance and clearly said, "By myself."

I sat in the waiting room and listened to the nurse talk to Erin and walk her though a procedure she already knew all too well. A minute later Erin came out of the room with a small cotton ball taped to her arm, and wearing one of the biggest grins she's ever had. I was immensely proud of her. To think how far she has come; no more threatening, no more coaxing, no more restraining. My little girl has grown up and has faced one of her biggest fears head on, and come through with pride on the other side. This special girl never ceases to amaze me.

That Time of Year Again

June is a wonderful time of year, due much in part to the graduations and other measures of accomplishment that happen for school students. Over the years, this time of year has typically aroused feelings of grief and sadness for me (read on). The post (after the jump) is actually a reprint from a post I made on my other blog 3 years ago (to the day, I just realized). So, again, I share a little of what my heart feels at these times.

Am I Special?

So, as a father of a child with special needs, a question soon becomes apparent to me; am I special? Before long, after Erin was born, I began to realize that some people referred to me, (or was it just in my head?), as "Erin's father". Real or perceived, it was real to me.

Having a child with special needs soon made me aware that I was, in some way, special myself. Maybe it was all the people that sought to comfort me in saying that "God never gives a special child to an unspecial parent." A nice sentiment, but is it true?

I would never have thought of myself as special. I am an ordinary man. A plain man. A jerk, in many ways. I am not aware, to my knowledge, that any of the people who know me, refer to me as special. Yet I cannot deny, that, having been singled out to be a parent of a child that has the odds of 1 in 900 of being born, that I am in some way, special.

So, having been given the gift of a child of special needs, I will, as they say, rise to the occasion. My perception of who I am has not changed. I simply try to be the best father I can be, to the child God has given me. How can I not love her? How can I not seek to give her the best life she can have?

This is my calling, and in that, I guess, I am special.

A Little Background...

I know that many who are reading this blog will have known me and my parenting journey for some time, but I thought I would share a little of my personal background story for those that are new.

My wife and I were married in 1986 (yes, we recently celebrated our 25th wedding anniversary!) and after a few years of planned childless marriage, we began to try to start a family. After struggling with infertility for several years, we were overjoyed to learn in 1993 that we were expecting our first child.

About 24 weeks into the pregnancy however, a routine ultrasound revealed a serious abnormality - there was virtually no amniotic fluid in the womb. My wife was immediately followed up with daily prenatal assessments. As part of that process, a cordocentesis was done to see if there was an in utero virus responsible for the pregnancy complication. With that blood sample, they did a routine chromosome test, which told us that our unborn child had Down Syndrome.

Though this news devastated our hopes of having a "normal" child, we nonetheless continued to pray that God would save the life of our unborn child, and deliver her into our arms safely. And that's when, God began to do a miracle. Whereas up to that point the fetal assessments showed that she was dying in the womb, her status in follow-up assessments began to show a dramatic improvement.

In the end, Erin was born at full term, and besides having low birth weight, did not have any of the health problems the doctors predicted she could have based on the earlier pregnancy abnormalities.

Our experience with our daughter's gestation and birth taught us that we tend to put implicate faith in the medical profession. After we were given the news of our daughter's pre-birth diagnosis, we realized later that we had begun to grieve her loss. But as we began to hope again for whatever God had planned for her, and after she showed how she defied all odds against her survival, we understood that doctors have their limits of knowledge as well, and that each and every life is in God's hands.

In those weeks before Erin was born, and in the weeks, months and years following, our understanding of what is "normal", healthy, and beautiful, changed drastically. I will leave it to subsequent posts to share how Erin's entrance into our lives changed us, very much for the better. We continue to thank God for answering our prayers over 17 years ago, by giving us this special gift.