My daughter has a rare genetic disorder called Wolf Hirschorn Syndrome. Since it is rare, hardly anyone in the special ed community has heard about this. So when people ask what this is, I usually have to go tell them about the 4th chromosome deletion, what developmental delays are to be expected, and the list of complications that my daughter has.
When it comes to the part of saying all of the complicated things that Isabella has, I cannot help but choke on tears. Its just seems too much for a small 7lb baby to handle.
Last night when a friend and I went to meet a group of parents with special needs children, I had to introduce myself, and of course I have to go tell them about my 3 month old baby, and yes… the litany of complications. And just as expected, I found myself crying in front of people I just met.
For one more time I will list the complications that my daughter has… here they are.
Atrium Septal Defect
interhemispheric cysts in her brain
Sub arachnoid cyst in her brain
Mega cisterna magna
Partial agenesis of the corpus callosum
Parabilliary cyst
Cleft Palate
Kidney hypoplasia
Hearing Loss
Wolf Hirschorn Syndrome
Acid Reflux
Kidney Reflux
I'm just waiting for the seizures to start anytime soon.
As usual, I’m crying again as I am typing this.
However, this time I promise myself that this will be the last time that I will let my emotions take over me.
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6 comments:
OK so - I don't want this to sound harsh but I know that you are a Christian and so I want to challenge you on something (if you want to keep this comment between us then you do not need to publish it - that is totally up to you). Anyway - I am often reminded that what we SAY and the things we SPEAK and put into writing matter. For a non-Christian they may not get it but for you I just wanted to say that "The tongue has the power of life or death and all who love it eat of its fruit." Proverbs 18:21. I would challenge to you watch what you say and the things that you speak over Isay. I pray that she never has seizures. I speak that same thing over Norrah. Its not to say that we may not still have kids with seizures - we cannot see the future - but, speaking life, health and seizure free over Isay is much better than speaking things that ARE NOT as though they ARE. Just a little loving challenge. I really hope you can sense my heart on this. It is not to condemn you at all - just challenge you with what I too have been challenged with in the past. Our words matter - they change things - make them good. I know there are other WHS moms speaking so much negativity out there. I know. Just thought I would say something to you because I know that your faith is in God and that makes a difference. Love you.
Hang in there. When Dylan was an infant it too seemed like every appointment I took him to they found something else wrong. It was heartbreaking, but the doctors were wrong a few times too - Liver failure, cataracts, blindness and my favorite cerebral palsey - I was told he possibly had all these things too, but NO! Thank God they were wrong. I know it's hard. I've cried more this year than in my whole life. It will get easier. Hugs to you :)
@ Lauren:
I understand that you mean well... although i have to admit that your challenge pricked me. I felt guilty about being on the verge of giving up. Sorry God.
Honestly, I am just tired of being disappointed over and over again... i am trying to see the glass half full amidst all this but it almost seems like im running on empty. Perhaps as a coping mechanism, my last resort was to throw in the towel. But god trusts me, it seems that he trusts me A LOT that he is confident to give me ALL these challenges. I trying my hardest to keep the faith Lauren... really trying. I have had a string of good days wherein when i catch myself plagued with worry I go, "God must be up to something, so its all really up to you lord. I'm just your humble steward. Your will be done."
Help me pray through this.
Madonna - You are doing a FINE job! Definitely did not intend condemnation or guilt from my challenge and I trust that you know my heart was just to spur you on. It is tough to say those sort of things in cyberspace because you can not hear tone and see faces but - just know it was definitely out of love. :)
I think that you are doing great. I know that in MY past I said so much negativity and I reaped negativity. I know it is tough at times. None of us, not me or ANYONE does things perfectly or sees things half full all the time.
We are all here to pray for you, encourage you and lift you up when you feel that you cannot do it any longer.
You are right that God does trust you and you are doing great. Praying for you!
You are soo right though Lauren... i need to remind myself to not only surrender everything to god but to cleanse my mind too of the negativity. We do need to be careful with the things we say and the thoughts we have. And if it does so happen that the results are always the opposite of what I hoped for i should still accept the challenge and see it as a blessing, a humbling experience, an opportunity for growth. It will be challenging, i would have to put that out there.. so just in case i slip (again) please understand that I'm going through the motions so i can get to the other side. After all, i cannot deny myself from these feelings if i do want to see myself through to ACCEPTANCE.
Thank you Lauren for the little nudge. You're a true friend.
Madonna,
I know what you feel about how asking much more can you take and having to "choke back the tears" when you list Isabella's complications. I have been in your shoes. I remember with my daughter, Amanda, feeling overwhelmed every time I took her to the doctor. There was always one more "problem" to add to the ever growing list-- a list that started less than a week after she was born. She developed low muscle tone after a surgery to correct a displaced anus at 1 week old, so and has needed PT, OT and speech therapies her entire life. She has always been delayed in all aspects of her development-- albeit not a result of a chromosome disorder. While recovering from the same surgery, she was overdosed with Morphine. I take her to the eye doctor? Visual processing disorder, visual tracking issues, and lack of depth perception. Long term effect? She needs glasses but may never be able to drive a car. Take her to the neurologist? Autism and Dyslexia. Take her to the Gastroenterologist? She has Crohns Disease. It has been a challenging and overwhelming journey thus far, but one I had been able to look at as God's will and just accept. However, it is perhaps because of those 11 years of emotional struggle that I am having a much harder time with Kaylee's condition-- the one our daughters share. I am sure that I am one of the WHS moms that Lauren references who are speaking negativity-- for me, it is going to take perhaps much longer than other moms as I have already experienced so much over the years. You work with children with special needs-- you know their long-term struggles so it is going to tug with your heart perhaps a little more than other moms in unrelated fields. One thing I am certain of is that you have to take your own journey in whatever time it takes you to get to that place of acceptance. You cry whenever you need to-- do not withhold your emotions for the sake of others. If you do, you will find that it will build up inside and come out later on-- and in greater force. Again, I speak from first-hand experience. However, I do agree with Lauren that allow your faith in God to get you through. They say he can perform miracles.
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