Friday, September 11, 2009

Why I started this blog

When I started my blog almost 18 months ago, the main reason was to keep my friends and family updated on our little Matthew man. As it evolved; I hoped that someday maybe someone would happen upon my blog that was desperately looking for hope and answers after a diagnosis of hydrocephalus. I know one of the first things that I did after our ultrasound that day was to torture Google. I googled and googled; for hours, clicking and chasing bunny trails on the internet. I found some interesting blog sites and message boards. I have been blessed to live in a day and age when this information is so readily available. I've always wondered if anyone out there has found my blog in a similar way. I've often wanted to 'write them' and encourage them to keep their baby and not give up hope. All too often these days, couples are counseled and often strongly encouraged not to give babies like Matthew a chance. They are given the choice to play God, (which I don't believe is a choice, by the's not my choice to decide the days of another innocent humans life).
Recently, on a message board I belong to, in which the members are those whose children have been affected by hydrocephalus, I gave my opinion to another expectant mom on this very subject. And after I re-read it; I knew that this is what I wanted every mom that finds my blog to know. So I'm editing it a bit, and I'm going to post a link to this post on the sidebar of my blog; so just in case someone finds my blog and is searching for hope and the answer for what they will choose; maybe I will be of some help.

If you have found my blog because you are searching for answers after you've received a prenatal diagnosis of hydrocephalus, I've written this with just you in mind.
First of all, let me give you a little back round. My son Matthew is 15 months old. We received his diagnosis at 20 weeks gestation. Unlike some of the 'doom and gloom' other parents have received after the 'hydrocephalus diagnosis", our perinatologist was very optimistic. He said that while there really is no way to know his future, MOST of these kiddos with this diagnosis do remarkably well, and are caught up developmentally by school age. He also said that there would probably be some sort of learning delay or disability; but plenty of other children who are born under typical circumstances can have the same issues. We clung to those words of hope, and my pregnancy was pretty uneventful, and I was very hopeful that we would be in the "MOST" category. While I worried a bit, I don't feel like I was fear-filled. I researched, I educated myself, I met lots of great people on the internet going through similar circumstances.
Matthew was born in May of 08, shunted the day after he was born and we took him home after 10 days. He did awesome. He was completely breastfed and everyone marveled that he seemed so 'typical' (quote un quote normal) At 2 months, he started having seizures, at 4 months, infantile spasms. By nine months, all the medications we were forcing in his mouth 3 times a day gave him a huge oral aversion. He ended up with a g-tube for his meds. At 12 months of age, I could not calorically keep up with his needs, and he quit gaining weight. Since he would only breastfeed, and not eat by mouth (due to the oral aversion of anything but breastfeeding) we started giving him formula in his g-tube. By 14 months of age, he was getting all his calories by tube and quit breastfeeding.
Matthew is developmentally delayed. He doesn't sit up, he doesn't roll over, he is visually impaired.
And our perinatologist is right, most kids with hydrocephalus do end up doing remarkably well, but I do believe Matthew has ended up having more struggles than the average child diagnosed with hydrocephalus.

Now that doesn't quite sound like the happy ending we were hoping for, does it? I beg to differ. Sure, it's not what we'd hoped and prayed for; but I believe we are far more blessed and than if we'd received our pre-pregnancy 'dream'. We cherish every day. We have learned to cherish the small things; the milestones other parents may not make as big of a deal about because it's expected. He notice EVERY time Matthew smiles, we get excited when he reaches for our faces. We coo back at him every time he makes a noise-no matter where we are; he is never 'shushed' for the sweet noises that come from his lips. We cheer when he lifts his head off the ground. When he's sick in the hospital, we cheer when he bats the oxygen tubing off his nose, because we know it annoys him and it is a sign he's getting better.

Here are some other things I would like you to know:

#1 Ultrasounds are not a definitive diagnosis for a child's life; especially when you are talking about the brain. There is a large variance. The brain has an amazing way of rerouting and rebuilding itself. You can get a bad prognosis and they can be WRONG! and vice versa. NO ONE KNOWS; they can speculate, but no one knows!!! And even if they only have a 'ribbon of brain' that 'ribbon' can make up for what is not there. Every doctor will tell that there is alot that is not understood about the brain.
#2 Just because Matthew is visually impaired, developmentally delayed, gets his nutrition through his g-button and not his mouth does not make him unable to participate in life. He is most loved and happy baby I know. He is a pure joy to our family and he enjoys life just like the rest of kids his age. He is held, he plays on the floor, he cries, he gets his diapers changed. Sure he has struggles; but so do all of us. I have given ALL of my children a chance to have a happy life; not ONE of us is guaranteed a tomorrow, much less an easy life. Just because all my other children were born 'typical' doesn't guarantee them to 'be like other kids'. There are lots of variables in life and childhood. NO GUARANTEES.
#3 I have personally been in contact with 2 moms who were given grave diagnosis for their children; but whose kids are 'typical' and the doctor's were wrong. Not that that matters to me though. Life is life. No matter how many days you have; it's still life. Whether you live 1 day or 100 years or anywhere in between, it's still LIFE.

Would I change the ways things are? Well, that's a loaded question. I would love to not have any of my children have struggles in life, whether it be medical, physical, psychological, educational, or make poor decisions and anything otherwise. All moms want that for there children. I would take away their struggles if I could. BUT I CAN"T. It doesn't make their life any less worth living.
Do I love Matthew less or think he has a 'grim' life because of his struggles? ABSOLUTELY not!! He in some ways has a better life than others. He is the closest thing to an angel that I'll ever get to meet on this earth. He doesn't know jealousy, hate, and he's doesn't pass judgement on people. He loves unconditionally. And I am BLESSED and privileged to be his mommy! I AM THE LUCKY ONE!!! Not all moms get this chance!!

So my advice to were given this child for a reason. Love him for all the days of his life; whether that life be hours on this earth or decades. Love him whether or not he has struggles. He will bring you joy beyond measure. Will you cry?, yes; will you at times be frustrated?, yes; will you wonder how you will do it?, maybe; will you regret giving your baby a chance??? I think the answer will be NO!


Josephine said...

Beautifully expressed. Truly.

Angie said...

What a wonderful post! Thank you so much for posting - I hope it can give other moms hope!

Kristen said...

Jill, this is so perfectly written. Your words and thoughts are touching.

There is so much we would have missed out on if we would have played "god" and ended our childrens' lives. Can you imagine??

My mind holds the vivid memory of what it felt like when the doctors gave us the grim news of our baby girl. And then the long list of what her disabilities likely would be because of her brain damage. It would have been quicker for him to just say, "Your daughter will be a vegetable".

I am so glad I have my strong faith based upon The Bible. It kept all that pain and fear I had from taking me down the path of wrong choices. I made the right choice of giving my baby life.

If I would have chosen to end her life, I would have always wondered what life could have been like if I didn't make that decision.

Having her in our lives now, I never ponder or wonder "could life have been better if we would have ended her life?". I shutter at the very thought of not having her here.

One of my all time favorite movies, "It's a Wonderful Life". I have thought about that movie so many times in the last year. The story line holds the perfect message of how each person's life is so significant, and to me that means even an unborn baby's life. We are all inextricably linked to each other and play an important part in the fabric of one another's life.

Cayman has played a large part in my life, and has helped me be a better person. Life is beautiful! This place called Holland, isn't nearly as bad as I thought it was going to be. It's actually quite beautiful and I know I am a better person today than I ever have been because of Cayman. What pure joy it is to be able to say, I truly love who I am. I truly love my life!!

Angela said...

Very, very well said!! And oh, so true. :)

You should bookmark it on your blog's sidebar so that people can click on it when they first come to your blog!!

Lisa said...

Oh Jill, what more can I say than what you have already written? This was beautiful. It gave me goose bumps. You expressed my feelings, exactly.

These children of our are happy, they are enjoying life, and they make everyone around them feel the greatest sense of joy. What more could you ask for?

My mother and I often discuss the fact that Elisabeth is the lucky one. She is living and will continue to live a blessed life. She is adored by everyone around her, she is treated like a queen, she is held and snuggled, her every need is met, she has two big sisters who play with her, she will never know of fear or of the scary evils of this world. She is living in a state of ignorant bliss. So yes, her life is worth living.

Thank you for this post. And thank you for being such a dear friend to me. I have enjoyed having friends to share this mothering experience with :)

Michelle said...

Thank you so much for your post! One of the worst days ever in my blogging life was when I received an email from a woman who told me that she too had received the standard "grim" diagnosis and had been convinced to terminate. She said that if she had just found Owen's blog before she had made her decision that she might have done things differently. My heart just broke.

But each person that joins our community of blog friends, who places a link and takes the time to share their child's story - each one is doing an amazing thing by giving pregnant Mom's (and Dad's) a true picture of what life is really like for children with hydrocephalus. And for that I thank you.

I have met a hundred or so families thorugh the website and in all of those cases, only one was truly the worst case - where the pressure was so great that even the thin ribbon disappeared. I grieved with them and I think of them often. But if I have met only one, then it seems incredible to me that the doctors always jump to the conclusion that this is the only possible outcome. Perhaps what we need as a society is simply a new definition of *grim* and all of you bloggers are playing a huge role in doing just that!

Zoe said...

I just want to let you know that I am one of those mom's that found your site and was given a lot of hope when we learned of Lily's dx last November. We learned of her condition very late in our pregnancy (33 weeks) and even though it was so late we were told that "termination" could be arranged. :(

Ken and I knew right away that was not an option. We knew (through A LOT of prayer) that everything would be fine and this was part of Gods plan. This experience has strengthed our Faith and has made us appreciate the miracle of life so much more! I truly feel that we would have missed out on a lot if things would have been differnt.

Thank you for such a beautiful post and continuing to share your life with all of us!
God Bless!

Melanie said...

Jill, your words have such beautiful truth to them. I get choked up just reading it. Thank-you for expressing so perfectly the sentiment so many of us hold in our hearts.

Sherri said...

Jill. I love you. Thanks for being you. I have no doubt that this post will bless many and comfort them in their despair.

Janice said...

Beautiful post. Thank you.

Tyler said...

Jill, your words speak the truth and are beautiful. I also had an optimistic doctor that I am very thankful for. I couldn't imagine a doctor say to terminate when they really have no idea. I couldn't imagine life without Tyler. He has brought us so much joy and made us realize to slow down and "smell the roses" and appreciate the small things.

Thank you so much for sharing your thoughts and words of wisdom. Absolutely BEAUTIFUL!!

Diane, Tyler's mom

April said...

I followed your link from Lisa's blog and just wanted to echo the words of so many! Your post was beautiful and so very true! My feelings exactly with my little boy...

Carla said...

An AWESOME post from an AWESOME mom! No truer words were spoken. We are the lucky mommie & are babies are angels:) Thank you for this post:)

Keesler Chaos said...

And not to mention what a blessing he is to the rest of us! Your little man is a sweet spirit, and it's a blessing to me when I get to cuddle him, and see his sweet face!

SuzanSayz said...

Jill, this was beautiful. I'm Susan, Lisa's mother-in- law and best friend. Everything you said is so completely true. Elisabeth simply shines. She is one of the sweetest blessings that anyone in our family has ever been given. If your letter stops even one mom from terminating the life of her unborn child, then you have served and served well. I think though that it will have an even bigger influence. The one thing I would like to add is that my youngest son Shawn who turned 23 this summer, is mentally retarded and also afflicted with autism. He is the light of my life. I write about him on my blog once in a while and all of my readers love to hear about our exploits. In my opinion, a disabled baby, of any kind is not a burden. Doctors DON'T know everything. We feel doubly blessed in our family to not only have Shawn, but our precious little Elisabeth as well. These are people who love in the purest way possible and the loss of even one of their lives is a tragedy for the entire world. Thanks for being there for the many families that need to meet someone like you.

Katy said...

Lisa S sent me here. This was a wonderful postand you put into words what so many of us special mommas are thinking.

Anonymous said...

I just wanted to share this website for parents of children who are prenatally diagnosed:

benotafraid dot net/

Leah J. said...

Thank you for sharing these beautiful words and thoughts. We received our pre-natal diagnosis of hydrocephalus a week ago today (at 17 weeks, 4 days). It feels like an eternity ago. What an up and down journey it's been ... and it's only been a week. We already feel so privileged to be the parents of this little boy (Liam)! Some days are easier than others (and I know that will continue), but we are filled with the Lord's peace over Liam's health and His plan.

Anonymous said...

Jill- Thank you so much for posting this. I remember the day Alivia was diagnosed, you and matthew have helped us through some of our darkest hours with your encouragment and kind words. Ive never met you but not a day goes by that I dont think of the gratitude I feel towards you.

Eva and Alivia Crump

Anonymous said...

Jill- Just rereading this beautiful post. It should really be published!

Lori said...

I literally just went through this with my daughter Seeley who is 2 months old and is at UNMC Omaha. She has Hydrocephalus and an underdeveloped right lung. Her CO2 levels are high, which they think this is all neurological. The doctor who had only seen Seeley for a week told me "You can take her home on O2 and let her pass, or do a trachiostomy and leave her in an institution" I totally freaked at either thought. But we knew we couldn't "Play God". There is so much to Seeley we don't know yet. That doctor has never came in and looked at Seeley. He just looked at her MRI and wrote her off!! Anyways we decided trach was the only way we could go so that was the plan. Until the next Doc came in for her 2week round, she had the ENT come and look at Seeley for the trach and said she does not need it! Which is great, wonderful,excellent!! So on this Monday she will get a G Button and Fundal done. Her Co2 is always high but yesterday it was 83, which is higher then they would like it to be. So they decided to up the O2 and today it was 73. Which is good for Seeley's levels. So now they are thinking of getting her home in 2 weeks! I am glad to have found your blog.It will be a great resource plus a mood booster! Thanks!

Tonya said...

Thank you for posting, even though I am still in shock and not sure of what I even read. I just found out today that I am expecting a daughter, Faith Renee, and then came the terrible news, she has just a thin strip of brain tissue. My doctor has set me up an appointment with a specialist but thats 2 weeks away. She gave me a name of what she thought it might be...holoprosencephaly..I don't know if this is similiar to your experience but I am gasping for any answers. Please let me know any information you may have.

Cawley Family said...

Its been a little over 10 days since we learned of our daughters diagnosis of hydrocephalus on our 18 week Ultrasound. We are told it is "severe" and that the prognosis is "not good". We were then offered termination. Twice. We knew this was not an option for us, but it didn't make facing this new reality any easier. The uncertainty is the no doubt the hardest part, but God has assured us through prayer and His word that this is His perfect creation and He will give us strength. It is encouraging to hear that although different than what we expected, life- beautiful life- will go on.