The Value of A Life: Special Needs Children

When I was pregnant, several times I heard the often repeated phrase, “As long as the baby is healthy, that’s all that matters.” After my 20th week of pregnancy, I was not only being informed by doctors that my son was not considered healthy but that he potentially had a lethal form of dwarfism.

At the time, I didn’t ponder the fact I would be a special needs mom. My prayers were centered on my son beating all odds to be a miracle. One fall day in August, my prayers were answered and though I did not hear my son cry out at birth as I’d prayed, he was alive.

We were cautioned to count my sons time on earth in days rather than months or years. Then we celebrated his first month birthday and second and third month. Eventually my son came home and I remember baking a cake where I hand wrote “Happy 18 Month Birthday.”  (A feat for me since I don’t bake.) It was a momentous occasion.

Celebrating Samuel's 18 month birthday
Celebrating Samuel’s 18 month birthday
Homemade Cake
Homemade Cake
My son Samuel At Age 9.
My son Samuel, Age 9.

I didn’t wake up one day as a special needs mother. My son’s miraculous life made me one. But somewhere underneath it all, I sense others may not view my son’s life as being one of value because of his disabilities. How can I tell? It’s the questions. Will he ever talk? Will he ever walk? What do the doctors say?

How do I explain my son’s value? Then today I saw a picture on Facebook of another family and it became clear. The answer is in the picture. Here it is:

Joshua (Dad) & Baby Carter
Joshua (Dad) & Baby Carter

Do you see it?

This is Brittney Heard’s son, Carter and his father Joshua. Carter was born 25 weeks premature and has chronic lung disease and pulmonary hypertension. He is now 11 months old.

The answer to the question of value is summed up in one word in this picture. It is love. A father’s love for his son and a son’s love for his father. I think I speak for most special needs parents when I say the value of our children, though disabled, is the preciousness of this love and the bonds it creates.

When I was a girl, one of my favorite Bible passages was 1 Corinthians 13:13. And now these three things remain: faith, hope and love. But the greatest of these is love.

And so it is. And so it is.

Are you special needs mom? Can you relate to this blog post? I’d love to hear your thoughts. Please share below. I read each comment and look forward to reading your response.

Written By Evelyn Mann

Author of A Miracle In My Living Room

www.facebook.com/amiraclemann

 

Do you “Get It”? One Waitress Who Does.

May 5, 2015

A Special Needs Mom's Challenge To Keep Her Child Healthy

May 5, 2015

17 Thoughts on The Value of A Life: Special Needs Children

  1. Jesus told us to love one another. Of all the accomplishments any human could ever do, the greatest is to give love. Samuel gives so much love to people with his eyes and his smile. It radiates out of his fingers and toes too. When you see him and touch him, you can feel it radiate off of him. Samuel is a blessing from God just as he is. He has immeasurable value and purpose.

    Samuel is love.

    Reply
    • Dearest Maria, I can truly say that you understand the value and the essence of our little guy. It is one of your many special qualities. Until a few years ago, Samuel was attached by hoses to his ventilator (as you know). For me and you as well, those hoses simply melted away from your vision and all you saw was the brilliant smile and bright eyed boy before you. Now he’s off the ventilator, Praise God, and Samuel’s happy countenance is even more evident. Thank you for walking this journey with us. For always being our cheerleader. And for allowing us a special place in your heart. It is mutual. Blessings, Evelyn

      Reply
  2. Bless you mom, your child, and your family. Love…is a mighty powerful thing.

    Reply
    • Thanks Mary. Appreciate your comment and blessings. And, yes, it is powerful. Smiles, Evelyn (Samuel’s Mom)

      Reply
  3. Evelyn, thank you for this beautiful post! My grandson is a special needs child but you can’t tell it by looking at him & it would probably take you a little while visiting with him to see it. He is a high-functioning autistic. Of course denial is one of the stages some family members went through when we first got his diagnosis. But, as you said in the end it all comes down to love & wanting to give this amazing little boy the best we can possibly give!!!
    God bless you & your family!!!

    Reply
    • Dear Carla, Thank you for your kind words. I am sure as a grandmother, your heart melts when you see your grandson smile and show delight. Love wells up in your soul for such preciousness. Some people comment to me that were doing a good job in caring for our little guy. I sometimes respond, “Oh, he is easy to love.” It’s no trouble at all when you love someone. I hope your grandson continues to prosper and do well sharing his special brand of love with you and your family. Blessings, Evelyn (Samuel’s Mom)

      Reply
  4. Hi my s one was born at 23 weeks at 1lb 10 ozs with 10%chance if living. There was only one hospital that considered him viable. Texas health Presbyterian of Dallas. But the would only come if I kept him in and delivered when they got there. I was already at a ten abd he was ready for the world. But God answered prayers they rush to the hospital where I was it’s a hour and half drive But thank God for helicopters. My precious boy was born and he was as healthy as a baby born that early can be. No CPR needed for him to breath. I also had him vignally he had decided that was how he was coming so my Dr delivered him while stil in the sac to cushion him, he mad me a big splash. Then after his sperm donor cut the cord he was rushed to another room. All I saw of him was his lil hands and feet dangling moving from my drs hands as she passed h in to the care team. I had to wait a day befor heading to Dallas. Longest day of my life I had nightmares thinking he was still in my stomach kicking me, but then I woke up and realised he was gone. Saddest feeling ever! When we finally got to Dallas it was over welming and I finally saw my son he was so tiny. I just wanted to hold him so bad but they made me wait a month before I got to. That day was so amazing. We spent 6 and a half months in Dallas on a roller coaster ride. Almost lost him at 2 weeks. Then they found he had NEC and did surgery on him at only 2 weeks. He Then had a poop bag. For 3 months Oct 30 his exact 3 month birthday he had the surgery to reverse it. It went good but he had trouble getting off the vent. Pre surgery we was only on 1liter of oxygen so that was a big blow. We finally got back to the cannula a little after thanksgiving. He actually pulled it out himself. Then we started our journey to heading home. In January we started bottle feeding. And in 3weeks he was full bottle feeds no tube at all! Now all we had to wait on was getting stuff ready to go home and one last surgery for his hernias, we went home Feb 9th. Bow he is 9 months old 5months adjusted and is on a 6 months level 7 months for a few things. Tho our road was rough and I have recently became both mommy and daddy I always knew we would make it though this rough patch of life. Because we had God on outer side, we survived so many things NEC, ROP, almost having to be trached, almost needing a g button, and we proved statistics wrong. They say white baby boys are whimpy white boys. That they hardly make it. Well look at this baby boy now from 1lb 10 ozs to 14 lbs 3ozs at 9 months. He is going to do great things. Alos I pumped my milk for him for 7 months had enough stock to make it to 8 and half months. And I hardly went a day without spending atleastv6 hours with him. I love that bible verse Faith hope and love we need to have all three but the greatest truely is love.

    Reply
    • Dear Alisha, Thank you for sharing your son’s journey. I’m glad you were with him so much in the hospital. When we were in the NICU there were two babies that didn’t get visitors and it was heartbreaking. Some sweet volunteers came in to hold and cuddle the babies, so sweet. I’m glad you like the verse. Another one I held dear to my heart while my son was in the hospital was “He gently leads those who have young.” (Last part of Isaiah 40:11) It was just so comforting. I hope your son continues to do well and exceed all expectations. Thanks again for sharing. Blessings, Evelyn (Samuel’s Mom)

      Reply
  5. Thank you for sharing this. I’ve been thinking a lot about this lately. After my son’s recent high risk Nicu follow up (he was a micropreemie).. I was driving home just going over the visit/tests/evaluations. I remember thinking, “I’m surprised that the doctor was happy to see my son, but that he didn’t seem any happier that he was getting closer to hitting some of the milestones.” (Since he was born 4 months early there has always been an aweness that he might not ever hit milestones, or be an average child). I felt like god interrupted my thoughts and asked me if that’s what I thought he did. Was he happier with us if we aligned more closely with some evaluation people had made?

    I cried for two days when I realized how that had been my subconscious thought. I will never look at those evaluations the same. I will never quake inside the same way when my son can’t align with normal. I never want to see my child, or any other parents much loved child, other than being anything other than gods gift…A person with intrinsic value, no matter what they’re ever able to accomplish. Now I know, very deeply, that’s also how God views us. I’m so glad you were able to express that perfectly.

    Reply
    • Hi Heather, Isn’t it something when we realize what our subconscious thoughts are causing us believe. I had writer’s block and realized I was keeping myself stuck there instead of believing I could overcome it. It was a powerful revelation. I have since over the writer’s block, thank God. I am writing a memoir about my son’s story. I agree wholeheartedly with your comments, especially this one: “A person with [has} intrinsic value, no matter what they’re ever able to accomplish.” It makes me contemplate on what God thinks is normal. In naming my memoir, my husband came up with a potential title I think you will like: God’s Alternate Construction. So Samuel may not be the usual construction (dwarfism) but he is an alternate construction made by God. And that’s enough for me. Thank you for sharing your comments. Appreciate your perspective. Blessings, Evelyn (Samuel’s Mom)

      Reply
  6. All 3 of my children are my miracles, but my daughter is my biggest miracle of them all. She has severe Congenital Hydrocephalus, severe globally delayed. She was born with 10%of her brain and a brain stem. She has been through so much on her life.
    At 5 days old she had her first shut placed. In and out of the hospital for failure to thrive her first year of life. At 2 she had to have her skull broke in 8 places because her soft spot had closed up before it should have. While doing the surgery some fluid was allowed to escape and now has 50% of her brain. She had her first shunt revision due to malfunction at 3 1/2 years old. After that surgery she started walking more and wanting to do so on her own.
    She is 7 years old now and going in on Monday, May 10th to have her skull bones shaved down as far as they can and then filling in the sunken in places on her skull.
    She is saying a few words but is pretty non verbal, she is trying very hard to talk to us. She talks like a child in mostly babble.
    She is amazing and was not supposed to live at birth and she is still showing everyone that she is here to fight.

    Reply
    • Corey, Thank you for sharing the story of your daughter. I am familiar with Hydrocephalus because my son has a non-progressing form of it. I can also relate to your daughter being non-verbal. Samuel makes sounds and is saying “Papa”, “Mama”, and “Baba”. But he says so much with his smile which lights up a room…I just melt. Samuel was also not supposed to live past birth but God had other plans. He is now nine years old. May all go well for your daughter’s surgery on May 10th. Will say a prayer for her. Blessings, Evelyn (Samuel’s Mom)

      Reply
  7. Dear Evelyn,
    Your son, Samuel is a beautiful baby and his smile is priceless, a treasure from God. Joshua and Samuel are speaking love to each other with their eyes and their smiles! I am not a special needs mom but I can relate to your post in that my child at age 7, after receiving a booster innoculation, developed encephalitis and she was grossly affected for 6 months. Everything about her was different. She couldn’t walk. She couldn’t speak or think and communicate as she had before. It was truly devastating to experience the loss of her as we knew her. She still recalls seeing me kneel at her bedside. My prayer was for the Lord’s will…that in His mercy, He would heal her and…if healing did not occur, that the Lord would grant me the strength and ability to accept whatever the outcome. For six months, our bright and animated child was almost lifeless, essentially unresponsive; but, every little move she made was a victory! every little half-smile, a triumph. The Lord healed her that year and I lift up my life in praise to Him.

    A mother’s love for her child, I believe begins at conception. We love our little darling for nine months before the baby is born! No matter what! And we love them in life – no matter what! Your words ” immeasureable value and purpose are so sweet and true. God bless you and your beautiful family every day…every moment. Carole Castagna

    Reply
    • Dear Carole, Thank you for sharing the story of your daughter. I was on the edge of my seat reading it and am so glad she is doing better now. I would say you experienced what it is like to be a special needs mom and now have an empathy for what the journey is like. And, I imagine, you can relate and come alongside other special needs moms because you understand in a unique way. Thank you for words of blessing. God has blessed us and for that I am thankful everyday. God bless you and your family as well. Blessings, Evelyn (Samuel’s Mom)

      Reply
  8. this is my great nephew, this is very heart warming. thank you for posting this. Carter has struggled and fought so hard, he has a long way to go, but by the Grace of God and all the prayers and love that people have shown since day one is a blessing. God has huge plans for this baby. so precious is life. Thank God.

    Reply
    • Darlene, I have been following Carter’s journey and am excited to watch the progress he has made and is making. We too have been covered in prayer and thank God for the love and support of so many people, some who have never met my son in person. I look forward to continue to watch God work in Carter’s life and in my son as well. Thank you for posting your comment. Blessings, Evelyn (Samuel’s Mom)

      Reply
  9. Beautifully written post. Love it!
    Hi! Stopping by from Mom Bloggers Club. Great blog!
    Have a nice day,

    Reply

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.