Tuesday, 27 September 2011

Jonathan's Story

My husband and I were thrilled at the news that we were expecting our first child!  I was 26 years old. The pregnancy was exciting, each change and milestone reached was noted and celebrated.  I had a wonderful doctor, and we leaned heavily on her advice, as this was my first time experiencing prenatal care.  Around 18 weeks, she suggested I do a triple-screen (now a quad-screen) blood test used to detect possible cases of spina bifida, Down syndrome, and another genetic defect.  She said it was optional, but recommended doing it as it could change where we delivered, or what medical personnel were on hand when the baby was born, etc.  At her suggestion, we agreed.  The test was done at approximately the same time I had my first ultrasound.   We learned we had a SON on the way, and loved getting our first glimpse of him!   A few days after the blood test and ultrasound, I received a phone call from my doctor.  She was concerned about the results from the blood test, which indicated there was a one in 30 chance that our little baby had Down syndrome.  While the news was definitely unexpected, I was a math teacher, and deal in numbers and percentages.  One in 30 meant to me that there was a 96.666666% chance that our baby was just fine.  She verified the date of my last period to make sure the calculations had been done accurately.  They had the wrong date and with the revised numbers, we were given a one in 100 chance he would have Down syndrome.  So that was better, right?  Now there was less concern?  Wrong.  Obviously those in the medical profession know more than I do, and it became clear that despite the numbers, my doctor was worried.  She told us to schedule a more detailed ultrasound with a paranatalogist as soon as possible.  I was approaching what we learned was the 21 week deadline if we were interested in aborting the baby.  Though that word was never used, my husband and I both repetitively felt the implied undertones in comments of the professionals we were working with. 

Nervous, and a little unsure of what was going to be found, the second ultra sound was performed.  This time, careful measurements were taken of our baby’s arm and leg bones, and his remaining body.  Measurement after measurement was recorded, and the heart was examined extensively.  In the end, the ultra sound revealed that the arms and legs were a little short in comparison to the rest of the body, characteristic of a child with Down syndrome, but this can be seen in other children as well.  His heart looked fine.  Where did this ultrasound leave us?  In the same inconclusive place we began, but with continued concern. 

We met with our doctor again.  She made it clear that the only real way of determining the condition of our son was to do an amniocentesis.  Without that test, we could speculate as to his health, but make no clear determination.  We made it clear to her that terminating the pregnancy was not something we were interested in doing.   The amniocentesis carries risk with it that was similar to our small percentage chance of having a child with Down syndrome.  Not wanting to put the pregnancy at risk, and knowing we wanted this baby regardless of the outcome, we opted not to do the test.  Our doctor respected our decision, and continued to provide excellent prenatal care.

We had the usual baby showers, and watched my body grow, still with excitement and anticipation, but also with an extra weight and concern from that time forward.  While we didn’t have conclusive test results, the worry never left me.  I can’t say that I knew for sure my son would have Down syndrome, but never felt like he wouldn’t have it, either.  I tried to speculate how we would respond to the news if he did have it.  My husband and I both said we would embrace the situation, and do all that we could to help our son reach his potential.   We could not fully comprehend then that he would be one the greatest blessings in our lives, and the lives of our other children.

As my pregnancy neared its end, I asked my doctor how soon upon seeing the baby would she know of his health.   She said she could usually tell immediately.   This question and response proved to be important.

While driving to the hospital to deliver my son, I told my husband I was nervous.  So was he.  But we would be okay, either way.  Jonathan was born on a beautiful Oregon morning exactly on his due date, after 31 hours of labor.  I had always envisioned the birth of my first child to be an exciting, joyful, emotional time.  I was undoubtedly thrilled at his arrival, but the first words out of my mouth after I heard his first cry and before my husband left my side to go be with the baby were, “Does he have Down syndrome?”  My husband left me and asked the doctor.  I heard her reply in the distance, “You’ll have to ask the pediatrician that.  I can’t give a diagnosis.”  Not, “no, he’s perfect…”  or even, “No, he’s just fine,” the responses we’ve been given by my Obstetrician at the birth of my three subsequent children.   No, we got the “You’ll have to ask someone else” response.  Based on this response, and what my doctor had told me earlier when I asked how quickly she could diagnose it, from the minute he was born, I felt like my son had Down syndrome.  I told my husband, “I think he has it.”  He said, “We don’t know that for sure, let’s just wait and see what they say.” 

We did wait.  We held our little guy, and loved him immediately, but also studied him and wondered.  Soon the geneticists came in.  Somewhere along the line of their many years of practice, they threw bedside manner out the window.  The one in charge stood in front of us and inspected my boy, my baby, commenting on thing after thing that just wasn’t right.  His facial features weren’t fully developed, his head was perfectly round in a Down Syndrome sort of way, his eyes slanted slightly, his first two toes were too far apart, etc.  His hands actually passed the test, as they had two creases instead of the usual one you find in children with Down syndrome.  But in the end, there were more characteristics present than not, and their official diagnosis was that he does have Down Syndrome.  Tears were streaming down my cheeks as I watched them inspect my beautiful baby, but they didn’t even compare to the tears that were shed by my husband and I as we heard their final diagnosis.  They left the room, and my husband climbed on the hospital bed and held me, and we just cried.  A good long cry. 

The weeks that followed were hard ones.  While my husband never cried after the hospital, I did.  Many times.  I was mourning and grieving the loss of expectations I had had for my child-things he would never become.  Looking back, I was irrational in some of my thinking as I dealt with my grief.  I also began to read.   I needed to start to form new ideas and hopes and expectations for my sweet baby.  Frankly, it seemed that as I read, the messages continued to tell me what my son was not going to be able to do.  I would read and cry more, as I processed and came to terms with what my son may be capable of achieving.  If only I’d read or been able to see the other side of the story.  If only I had understood the joy, and love, and blessing my son would be to me. 

Jonathan is in our family to teach us, and to help others he comes in contact with.  Not only has he far outreached the “limits” placed upon him in much of the literature and by society as a whole, he teaches me life lessons every day.  From Jonathan, I have learned what it truly means to love, and to love purely.  I have learned what it means to withhold judgment, to avoid prejudices, to be more accepting of one another despite differences.   I see Jonathan model incredible perseverance as he works to master new things.  While there are no doubt added challenges with Jonathan, there are blessings which exceed anything I could have ever imagined.  I am so proud to say he is mine.  I know I am a better person because of him, as I strive to be more like him each day.  He offers himself freely to everyone, be it the prisoner in handcuffs we are passing in the hospital corridor, a stranger on the street, or a good friend.   It is up to us to open ourselves up to what he is here to teach us.  I am forever grateful to have traveled the last nine years with Jonathan, and look forward to the journey ahead!  

Monday, 29 August 2011

A New Chapter...Teaching other kids about Down Syndrome.

Ellie has started 1st grade.  This was a huge thing in our home.  Preschool and Kindergarten were not such a big deal but this really has been hard on Mom.  It is weird to think she will be gone all day. Eating lunch with the other kids and going to recess without me.  One thing I did if Kindergarten to help me feel better was demonstrate to the kids what it is like to have Down Syndrome and explain to them a little more about Ellie and Down Syndrome. 

I found a wed site that had some great tips on how to teach about Down Syndrome.  It was a lot of help.  When I went I first had the kids all point out ways that we are the same.  Two eyes, two ears, legs and so one.  Then i had them point out ways we are different, Color of hair, color of eyes, color of skin, all brothers, no siblings, and so on.  Then we talked about Chromosomes.  I explained that Ellie was given one more.  This made her a little different.  We talked about the things that make Ellie different.  Then we talked about the things that are the same.  I told them she loves Hannah Montana and barbies.  I explained how she has feelings and they get hurt just like yours do.  It was actually really great.  We did an activity where each child put a marshmallow in their mouth and tried to talk.  It was hard for them to do and afterwards we talked about how talking is harder for Ellie just like it was with the marshmallow.  I had them lift a weight with one hand and the other had was free.  This showed them how moving is harder for Ellie.  I had them put a glove on and try and write.  This helped them see that writing is harder.  I explained that some things are really hard for Ellie to do but she tries hard everyday.  I also explained that some things are really easy for Ellie.  She is very flexible so I had her show them that she can pull her leg up.  They thought this was cool.  I also told them that LOVE is very easy for Ellie.  She has the ability to love beyond measure.  They also thought this was awesome.  When we were done I had the kids ask question or give comments.  One of the kids told me that they learned that Ellie is a really good friend.  This melted my heart.  It was a great experience.  It really helped the kids understand that she would need them to help her and be kind to her.  The school year went really well and Ellie had a lot of kids that were her friends.  

I wanted to share this with you in case you were searching for something to help teach about children about Down Syndrome.  I found this AWESOME coloring bookthat explains Down Syndrome.  I had the kids take it home and teach their families about Down Syndrome.  I had a mother tell me that she actually learned from the coloring book.  Another parent told me that her child was so excited to come home and teach her parents something they didn't know.  It was a really positive experience.  I am just about to go and do it again in her 1st grade class.  I know it helped last year.  I sure hope it is good this year. 

Wednesday, 29 June 2011

Fiona's Story

I know I was smiling as the doctor was speaking. My brain seemed to be on delay as the words came out of her mouth and I starred into the compassion in her eyes. "Something is not right with the baby's heart". (Subconsciously, I made note of the fact that she choose to say "the baby" and not "your daughter".) The smile didn't leave my face, although now it was there more from nervousness then joy.

My world stood still for two weeks. Floating threw each day with a hundred unknowns. Whats wrong with her heart? Whats wrong with her feet? Are there any other deformities? Is there an underlying disorder causing the deformities? Will she survive in utero? Will she survive her first year? For me, the unknown was scarier then the known. Give me an answer, any answer, so I can find a positive and hold on to it with everything I have.

Those questions got me asking myself a lot of other questions. Mainly, why me, why my baby? There was a war going on with my emotions between accepting everything and completely losing it.  I prayed for strength for my little girl.

The call finally came.

Down syndrome.

My baby girl has Down syndrome I said to my self, in my head, numerous times after that phone call. If I could have pulled her out of my stomach and held her, I would have. My thoughts were filled with conflicting feelings. Feelings that I don't want this road, but I want her. Hope that this was all a bad dream or a mistake. That we were the 1 in a million who's amnio results were wrong. This is not what I had wanted, but I wanted my daughter, that very baby inside me with an extra set of chromosomes. I wanted her so bad that the thought of her heart condition taking her away from me was unbearable. I was a lioness protecting her cub when doctors even started to go down that road of "other options". And those first few months of testing and monitoring, I had to go on the defense a lot. It was not only initially assumed that I would abort, but encouraged. Most of the doctors referred to my daughter in disconnected terms to me such as "the baby" "it" and sometimes a little bit more acknowledging as "she". "She" was my baby, my daughter, my little girl. Their choice of words did not go overlooked on how they felt about the situation. Neither did the comforting words of the few doctors who still tried to treat my pregnancy as something special. Who called my daughter by the name we had chosen to give her and cared just as much about my baby as any other normal baby.

Her Down syndrome diagnosis was painful. I had to mourn the death of the baby I thought was in my belly and reacquaint myself with the differences and challenges the extra chromosome brought. I set out to educate my ignorance in what Down syndrome is, what my daughter would be like, and what kind of potential I could expect.

More alike then Different. A mantra in the Down syndrome community. And that's exactly what I learned and have found to be true as my daughter nears ten months. The more I researched, the more I found that my baby was going to be... a baby. She was going to need to be feed and changed and loved. She was going to learned how to roll and crawl and eventually walk, just maybe not as fast as her twin brothers did. She will go to school-elementary, middle, high school and possibly even college. I found that her potential was very near the same as the baby I had originally imagined I was having- a 46 chromosome baby. My  47 chromosome baby was just going to need some extra teaching and a whole lot of love- I could do that.

The heart condition was classified as a text-book Transposition of the Great Arteries, Complete AV canal, and only one valve. Two months later that text-book TGA "disappeared". Doctors called it a fluke, I called it God. The condition that would require immediate surgery was no longer there. We were going to get to take our daughter home for a few months before her heart surgery. Her Down syndrome diagnosis was suspected to be a form called Mosaic Down. I am hesitant to say, a less severe form of it, because its not always, but in our case, our daughter falls on the extremely mild end of the spectrum. Doctors called us lucky, I say we would have been blessed no matter how severe our daughter was.

Some days I was stronger then others. Most days, I cried. But as the months progressed, the tears changed from tears of mourning to tears from anxiety. I needed my baby to be in my arms. To see her face, feel her breath and to see that she was okay.

Fiona Hope Blaeske was born August 16, 2010, with a medical team prepared for the worst. But to every ones relief, she was better then anyone had anticipated. Her Down syndrome characteristics were so mild it had us questioning the diagnosis. And with the right concoction of meds, we were able to wait until she was 5 months old for her heart surgery , which was successful.

Her clubbed feet, that I was so terrified I wouldn't be able to look at the deformity, I couldn't get enough of. Now that we are fixing them, I miss the way her tiny baby feet could tuck up under her so comfortably.

She is a little bit behind for her age, mostly because her heart made her so weak for the first 5 months of her life. She doesn't just do stuff on her own, it takes teaching her and working with her, but eventually she gets it. And by teaching, I mean playing with a purpose. The early intervention state programs are amazing, and free! We get all the therapy we could possibly need through the state. Ours even comes to the house!

When ever I am looking at my beautiful daughter, I often think about the doctors who encouraged me to terminate. Its a rush of anger and sadness that over comes me. Anger that anyone would want to "get ride of" this gorgeous, incredibly strong baby. Sadness that they are ignorant about how wonderful the road less traveled is. And that they are ignorantly giving advice to scared mothers and fathers.

I know that my daughter is very well off compared to a lot of people with Down syndrome. But since she has come in my life, I have met lots of amazing people that fall all over the grand spectrum this disorder has. Their lives are challenging, but far from tragic. Because they make such positive impacts on everyone around them. Their parents all seem to be in agreement with us that the good parts completely out weigh the bad parts.

At Fiona's recent well visit, I filled out a development questionnaire. An are they doing this yet form. I checked off one Not Doing Yet box after another. But when it came down to the last two questions I was surprised with my response. Do you have any concerns with your baby? and
Are you having any problems with your child? My answer to both was NO.

I am not concerned with anything Fiona isn't doing yet. Because I know she will. And I am not having any problems with my daughter, she is amazing and motivated and setting her own standard of normal. This is what I wish I knew when I first got her diagnosis. I wish I could have tell-a-ported to this exact time and saw how content I was with this pace of life. I posted about using the "R" word a little bit ago. It comes from the Latin word, ritard, a musical term meaning to slow down. A beautiful slow down of tempo. That's what life with Fiona is like, a beautiful slow down. When people see how tiny she is and guess that she is only 3 months old (shes 9 months), or when she needs a little extra help learning something new, I am enjoying this slower pace of growing up. The tortoise wins the race. I know at some point, the gap will grow bigger, and my baby possibly may never be, say, a bio engineer or the first woman president (but, then again, I am not going to limit her potential!), but I have no doubt that my daughter will be a valued member of our society, the light of any room she walks into, and I couldn't ask for more.

If you are an expectant parent, scared of the future, trying to find hope, you will find it here- in the blogging community. It is what opened my eyes to the beauty of these kids, these people. You will find open, honest, but mostly beautiful windows into how blessed your life will be with that extra chromosome. I know that you may be looking at my daughter and thinking, "Well, she ended up with the best case scenario, but there is much worse" and you are right. But keep looking, because you will find even the worst are unbelievably blessed and beautiful and loved. I am not a special person to have a child with Down syndrome. I am no super hero or mother of the year. I just love my daughter.

Other source of comfort- National Down Syndrome Society's My Great Stories
Read Fiona's My Great Story HERE