Saturday, May 12, 2012

Mothers Day: What I Would Say

Being given a diagnosis of hydranencephaly for your child is no less than one of the hardest bits of news you will ever hear... The fact that it is delivered in such a horribly, pessimistic manner by medical professionals, makes it that much harder. Many parents are told during pregnancy, that their child has a severe brain abnormality and/or is missing most of the components of their brain that make life possible; that their child will not survive to term. Other parents are delivered the diagnosis after delivery, many times after being told throughout the pregnancy that they should terminate as the condition is not compatible with life.

As for me, I was told that my baby would not survive to term so termination was our only option. Once that idea was dispelled, the typically  joyous months of pregnancy were replaced by doctors appointments that were made primarily to see when he had passed... that's what we waited for. When he didn't, he was diagnosed with hydranencephaly at birth. Then we were simply told he did not have a brain & he would pass within days, a couple of months at the most. He would never recognize anyone in his life and would suffer with seizures and pain throughout.... he would never eat, he would never maintain his own body temperature, and he definitely would never show me that he loved me.

This things are absolutely false. I have yet to be in contact with a family who this prognosis has proven true for. Even those children who have passed in infancy have contributed such joy and happiness to the lives they have touched... most while never speaking a word, of course, but still shining in the lives of those who love them.

In honor of Mothers Day in the US tomorrow, we are sharing some quotes from the professionals... those who know the facts, as they have lived through them, the mommies. Those things they wish they had been told from the beginning, instead of being told "take your child home to die." May you take these words to heart & pass them along to those in your life who may face the same, or similar, circumstances in the future or even now.

"I would say that even though you may hear a lot of scary things about what your child's life will be like—even if many or most of those things do actually end up happening to them—that's not what is most important. Their inner strength, their achievements, the joy they get from simply existing: these are the things that make it all worth it. Everything else is just incidental." 

~Devoney, mother to angel ^Xavier^

"Don't believe all the doctors tell you go with your gut instinct and always believe you know your child best . Definitely ask other hydran mommy's advice when your child does something new you have not seen before . That was so valuable to me in my journey because someone always had been their before us and when panic was setting inside, when the doctors did not know what to do their advice brought hope and strength to challenge and fight for my child." 
~Gisela, grandmother to angel ^Megan^ and founder of Megan's Flutterby Fund

"I wish I had known what HOPE there was! Seek out support and information from every source you can! Take the best of it and leave the rest of it! LOL Also, definitely don't listen to everything the doctors tell you - your motherly instinct will often be right on the mark! No one knows your child the way you do, and don't let the doctors tell you otherwise!"
~Angela, mother to Chrissy & Sophie

"Although your heart is broken now, it will be pieced back together and made stronger than ever. You will have the support you need to care for, love, and raise this beautiful blessing. Through tear filled eyes you are about to encounter a whole new world. This journey is going to change your life forever. With love and support you will realize the true meaning of hope. Clinging to this hope, you will see your son do great things. Nothing is impossible. Since nobody has a crystal ball, enjoy the journey day by day. Keeping the hope in your heart is a lot easier when you take time to enjoy the blessings in life, and you are about to encounter many."
~Katie, mother to Johnny

"I wish I had known that all the questions I was asking the doctor, couldn't be answered properly cause the doctors didn't know the answers and their book of answers was so so wrong, and was actually never right, so instead of telling me to take him home, and get help to prepare his funeral, I should have been told to take him home and prepare to watch my little miracle prove their books wrong. Praise God that was 17years 5 months ago, and I am so thankful every day for my miracle boy. So I wish I had not just waited every day for what they said would happen."
~Avril, mother to angel ^Mark^ & Philip

 "Always go with your gut! Everyone can put there input but it is your child, your angel! You do what you think is best for them! Speak up and don't let others tell you what you should or shouldn't do for your child!"
~Amanda Johnson, mother to Abel

As for me, I am always perfectly clear on my views on this diagnosis and its delivery. While I understand that doctors must be realistic... a more optimistic approach should exist. When thrown a printed pamphlet of paper from google, with the words "Prognosis is death within the first year" highlighted... I wish I hadn't even fathomed that as the only outcome of my little man's life. Brayden will be 4 years old in just over a month. I spent the first 3 months of his life crying and waiting to say goodbye, just as I was told to do. Instead, I should have been looking at all of the signs that pointed to the fact that he is LIVING and not suffering. Thankfully his personality shines above any label he can be given, and he reminds me with the biggest smile on the planet of his sincere joy and happiness. 

More than anything, this makes me sad for those parents who were unable to dispel the doctors "professional advice" and were convinced to terminate... not only are our little ones LIVING with hydranencephaly, but there are parents who would love to provide the best quality of life possible to those whom's parents do not feel strong enough to do so. Instead of termination, adoption should be the first option. 

I'm also so sad for those parents who have had to say goodbye, far too soon. While our little ones do defy all odds against them, just by living for a day, we have to accept the fact that their lives will be short... then again, forever is never long enough to a parent. 

If you take nothing else away from this post, please take this to heart: that these children are given an opportunity to live a life, just as is planned. While it may not be the life we intended, nor the life we would wish for them, it is life nonetheless. 

And in honor of mothers day, which should be in recognition every day, have faith in small things. There are so many miraculous events happening in your world that often go unnoticed. Appreciate those things, whether they annoy you or ruin your days... there is a mommy out there who would give her own life to experience those things.

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