Journey with a Special Needs Child

Growing up I always looked forward to the next season… I couldn’t wait to finish grade 6.. couldn’t wait to get to high school… couldn’t wait to get my drivers licence… couldn't wait to have a boyfriend… couldn’t wait to get married… couldn’t wait to have children….

When thinking about having children never once did I ever think what if this or what if that. I just thought I would have children that would have the same excitement and reach each season as I did.

I was well on my way having gotten married and now the children were coming First we had Javiera who was a go getter and kept me on my toes. 2 1/2 years later we had Chloe who was this easy going chatter box. Along comes my 3rd pregnancy, more ultra sounds with concerns of the placenta. Due to these concerns they induced me 2 weeks early.

August 19th 2008 we were grateful to God for the safe arrival of our little 6lb 4oz and 17 1/4 inch baby girl Neveah Joy Harder. Besides the nurses needing to assist her in breathing at first, everything went well from there. We went home and we would watch this baby grow up as fast as the other 2 did reaching each milestone. Usually faster then momma was ready for. A mama always wants her baby to stay a baby a little longer.  

Neveah was just the most perfect baby she slept ate and was just so content. Me being a photographer, I loved snapping pictures of each stage. With them growing so fast I needed to have pictures  to reflect back on. I remember snapping her 2 month pictures thinking hmmm she isn’t smiling when I’m making funny faces n noises to get a nice shot. I noticed that she couldn’t hold her head up for too long she would lay her head down to rest, even  at 6 months. I just brushed these thoughts aside and just thought she is just such a calm baby.

8 months came around and thought yep now she is going start sitting by herself. 8 months came and went and still not sitting by herself and by this time I started feeling very worried, I made an appointment with the doctor thinking she must be low on iron or something. We took her in and explained to the doctor that she wasn’t sitting on her own yet. Thankfully he was quite educated and decided to do blood work, he knew this was more than just some low iron levels or what have you.

The day came where they had the results in and we got a call from the Doctors office that both myself and my husband should come in to go over the results. My heart sank and feared the worst and wondering what the worst would be. Waiting  for the results felt like an eternity fearing what did they find wrong with my precious calm baby girl. The day came where we sat in this tiny little examining room My stomach twisted in knots.    Dr. read us the results and were told she has a genetic condition that there was an error on her chromosome. Hearing those words left me feeling numb. ( I believe it was Gods grace). I had many questions and thoughts what would this mean…One of the questions was WHY? I spent a lot of time online researching this Genetic condition. Much of it I was in denial and thought no that isn’t our Neveah. I think it was Gods Grace again he didn’t allow me to see it all at once with what we would all be facing with Neveah. He knew I couldn’t handle seeing the whole picture.

At night, when my children and husband were asleep, I was left with my pondering. I looked back over my pregnancy and tried to figure out the cause as thou finding something to blame would help. Was it something I did or something I ate, too many ultra sounds, was it something my husband and I were exposed to? What about our other children how would this effect their future? what about one day when we would like to retire and enjoy our twilight years together just me an my husband and with grandchildren. Those dreams will be changed.

In my swirl of emotions I tried everything I could humanly think. We heard good things about certain types of massages,  certain chiropractic techniques and Natural herbal remedies. we ended up spending a lot of money and going as far as London to a Natural herbalist, to a  chiropractor in Toronto in hopes something would fix my baby, it only left us feeling exhausted and disappointed. We earnestly prayed God would heal her from her disabilities and that she develop like our other children.  Was there a certain prayer we should of prayed?   Was this because of our past sin or sin we weren’t aware of? Is this God’s wrath displayed in our child’s suffering? I turned to what did scriptures have to say about I was going through.  

 “And his disciples asked him saying, Master, who did sin this man or his parents, that he was born blind?"
John 9:2 

This passage had just been a story but now I turned to it for some answers in hoping we  could apply it to our life with what we were going thru at the time. Was God trying to teach us something? 

“Jesus answered, Neither hath this man sinned nor his parents: but that the works of God should be made manifest in him." 
John 9:3

One of the hardest things that I had to face is when I was around other children Neveah’s age,  I just so clearly saw her peers just far surpassed her in all the milestones. From smiling, sitting, crawling, talking ,potty training, walking  and running, ect.  As mother that mourns the death of her child I mourned the death of a vision who I hoped to see Neveah would become one day. I wouldn’t see her grow up as most children meeting milestones. Like I said earlier I  questioned WHY? but thru growing I learnt the question isn’t WHY? The question is WHO? Who is in control of my life and control of forming my children? And WHO do I believe in? The world thinks children with a chromosome defect are a mistake. But the Bible tells us:

"Thou hast covered me in my mother’s womb. I will praise thee; for I am fearfully and wonderfully made: Marvellous are thy works; and that my soul knoweth right well." 
Pslams 139:13-15

 “But God hath chosen the foolish things of the world to confound the wise; and God that chosen the weak things of the world to confound the things which are mighty” 1 Corinthians 1:27. 

Even a childhood hymn really spoke truth to me and happens to be one Neveah’s first song she can sing the tune to.

"Jesus loves me! This I know,
for the Bible tells me so.
Little ones to him belong;
they are weak, but he is strong."

The Lord has given me the grace to except Neveah for who she is and for who she will become and we celebrate every little milestone that she accomplishes on her timing at her own level. I determined to measure my and my child’s success or failure by God measure, and not by comparing her to other children. God has chosen us and trusted us to raise Neveah just like our other children. Therefore we trust him to give us wisdom for this task of raising a child with special needs. Even thou there are hard times I am thankful for the comfort of His Word. “Come unto me, all ye that labour and are heavy laden, and I will give you rest. Take my yoke upon you, and learn of me; for I am meek and lowly in heart: and ye shall find rest unto your souls. For my yoke is easy, and my burden is light” (Matthew 11: 28-30) Neveah is a true joy and a delight in our family. Her singing has truly touched us and many others who hear her sweet sounds of a tune. She has taught us so much about love. She continues to touch many lives. Our girls from oldest to youngest have formed this protective character to Neveah in being aware of where she is and that she is kept safe from danger. We are so thankful to family and friends who have  helped with her from babysitting, chatting with her, or cuddling her.  It is so precious to see her have a special spot in other people lives to her worker at school , and all the children at school that fight over who is going to hold Neveah’s hand when she comes off the bus in the mornings.

I don’t know what the future holds but I trust and know who holds the future and that is where I find rest.


Helena Harder


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