Sunday, December 19, 2010

Heaven's Very Special Child

Heaven's Very Special Child

A meeting was held quite far from Earth
"It's time again for another birth"
Said the Angels to the Lord above
This special child will need much love
His progress may seem very slow
Accomplishments he may not show
And he'll require extra care
From folks he meets, way down there
He may not run, laugh, or play
His thoughts may seem quite far away
So many times he will be labeled different,
helpless and disabled
So let's be careful where he's sent
We want his life to be content;
Please Lord find the parents who
will do a special job for you
They will not realize right away
The leading role they're asked to play
So with this child sent from above
Comes stronger faith and a richer love
And soon they'll know the privilege given
In caring for their gift from Heaven
This special child so meek and mild
Is "Heaven's Very Special Child."

- Unknown author

I have read this poem many times before and thought I would post it.  I have had some sad last few days, don't ask me why because I don't really know.  Maybe it is because Luke is already bearing weight on his legs and has head control at 6 weeks and it seems that Dylan just started doing that.  Or maybe because Hailey has begun asking more questions about Dylan lately.  For instance, "Mommy, why can't Dylan talk or walk yet?"  and "Why is baby Luke growing so fast and Dylan is growing so slow?"  My response has been that God made Dylan extra special and it is going to take him a little longer to do some things and it is going to take him a little longer to grow. 

I have been thinking about the future, and the truth is it really scares me.  I have also been thinking a lot of what life would have been like if Dylan was born with all of his chromosomes intact.  I even had to bite my lip to keep from full-on crying when I was in the checkout line at Walmart on Friday because I saw a little boy about Dylan's age running down the aisle.  I know that it is probably not helping me to have these thoughts but I can't seem to control it.  I am a pro at the art of smiling and laughing on the outside but screaming on the inside.  Unless I tell someone that something is wrong they usually won't know it.  So last night I went on an Internet search to look for some inspirational quotes or poems for parents of children with special needs and I came across this:

Everyday brings us unique challenges that can wear us down or build us up.
For within each day:
  • We may have every strength and weakness of our own tested
  • We will have to fight and advocate for our children
  • We will choose to protect our integrity and theirs
  • We will stand firm amongst criticism and in our beliefs
  • We can choose to embrace their uniqueness
  • We will love them with every part of our being
  • We can find renewed hope and strength
  • We can find peace and love where there may have not otherwise been
  • We may cry, grieve, and mourn what we cannot, or do not have
  • Yet, we can choose to celebrate, value and appreciate what we do

We face life with an incredible amount of strength and courage.  We count our blessings, we realize the frailty and preciousness of life, we find wings we may have never had, and we, in the end, inspire others and show our children amazing and unconditional love.  We climb a tough mountain, but the steeper it is and the more hurdles we encounter on the way, the more we appreciate the view from the top.  We have seen and learned things most people don't get a chance to.  We value differences, validate each other and know a love and appreciation deeper than most.

I think this hits how I feel right on the nose. 

Then no matter how sad I am or how much I am crying I take one look at this precious face and my heart melts and I can't help but smile.


  1. Hey... You are not alone in this. I know those feelings so well.

    I'm dreading the moment when my firstborn will ask me why his sister is different from the kids her age. My heart breaks now just by thinking about it, but on another note I know that seeing this difference will put him on a path of becoming a more compassionate, loving and deeply caring person. All qualities I want him to have.
    I'm sure today will be a better day. Hugs.

  2. What adorable pictures of Dylan!

    I had to hold back tears the other day when Toller said that he will one day have a brother. When I asked what he meant he told me he would get a brother when Magnolia gets married. He talks about doing so many things with Magnolia when she gets older that I know she won't be able to do. I find myself sad not just for Magnolia and not just for me but also for Toller.

    Thanks for posting the poem. Thinking of you and sending hugs!

  3. This made me break down and cry. I have found this holiday season to be very difficult, as well. It was this time last year that Mark and I were anticipating Kaylee's birth, and we painted a very vivid picture of how it would be with Ryan and her opening presents together. Each day is a struggle for me to get through without welling up in tears; I know how you feel. I know that this may come out the wrong way, but cherish Luke's "normal" development and try not to compare. You have two healthy, "normally-developing" children-- one of each gender. Dylan's differences and challenges will help them become more sensitive human beings. I cry for Kaylee's differences, but I also cry over the loss of never having the chance to know what it would be like to raise a "typically-developing" daughter. I have 3 children, and only 1 will drive a car, graduate college, get married, or (hopefully) give Mark and I grandchildren. I grieve the loss of the wedding I will never help plan and the prom dress I will never go shopping for. I do not mean to compare-- I just mean to say that I completely understand your emotions; you are not alone. Thank you for posting those poems. xo

  4. Beautiful poem. "I have had some sad last few days, don't ask me why because I don't really know." Six weeks postpartum is a tough time no matter what. You've been through more than your fair share lately - nothing wrong with taking some time to feel the sadness.

    We just went through the IFSP process for the new year with Frank's Early Intervention, and we've increased PT, added speech, nutrition eval, etc. We also opted to add psych services. I don't know if this is available to you in CA, but we will have a social-worker (psychologist actually) coming to the house once a week to help with stress/anxiety for me and my oldest son (9). It's through the EI program.

    I mention this in case it's something you might be interested in considering... I'm sure you know it's not necessary to be smiling on the outside and screaming on the inside.

    Thinking of you and wishing you a very Merry Christmas,

  5. beautiful poem! thanks a lot! dylan is indeed a beautiful boy!

  6. Those sad days are always there in the background and do tend to come out around the holidays. I found it particularly hard the winter Haley was only a few months shy of 3.

    That Thanksgiving, I cried while driving with the kids to see my parents. I cried while in an educational toy store trying to pick out a toy for Christmas for Haley who wanted absolutely nothing to do with toys. I cried too while waiting in the doctor's office after Haley received her shot to prevent RSV and a nurse walked in on me. I cried for fear of the unknown for all of us and I've always felt a strong sense of guilt for bringing Haley into the world this way.

    Even though I've always been very honest with Nat about Haley and what her abilites might or might not be, he has recently been interested and observant of Haley and what she can or can't do and wants to know if she'll talk, play, drive a car, hunt like him. One evening he was writing a letter to Santa and commented about something Haley had done and how she seemed so regular. I asked him if he meant Haley seemed normal and he said yes. I had to get up and walk away so I wouldn't cry in front of him. My heart skipped a beat or two.
    There are hard days and there are good days. I think that is normal and there is a point when the good outnumber the bad.
    Thinking of you and, by the way... that last pictue of Dylan is gorgeous.

  7. The author of "Heaven's Very Special Child" is Edna Massimilla. Best wishes to you all.


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