How I've Changed Since Having A Child With Special Needs
Allowing your child's struggles to shape your heart
The other day my heart hurt. I watched my child cry…no sob, and I cried too. I wished that I could fix everything that was wrong, but I couldn’t. So I cried. Mostly on the inside. On the outside I tried to be strong. On the outside I put on a strong Mom face and comforted my child. As my heart was breaking along with hers, I wiped her tears and told her she would be okay. I held her with comforting arms until she started feeling better. Then I bought her French fries which always helps.
The reason why she was hurting was because she couldn’t sing. She couldn’t sing with a microphone…on stage…in front of her class at church. It wasn’t her turn. I get that, kids need to take turns, they need to share. She needs to let others have their turn. But, you see, Elizabeth has special needs and doesn’t always understand the “whys” behind things. Elizabeth has one passion…singing and that’s what she wants to do. She sings in her room, she sings in the bathroom, she sings in the car, she sings ALL THE TIME. The one thing she really looks forward to is singing. We go to church twice a week and they sing in her class. The kids take turns going up front and singing praise and worship songs. ALL WEEK LONG she asks me if she is going to sing in front of her class. Sometimes she asks 100 times a day, or at least it feels like that.
And then something wonderful happened. The next time we went to church they devoted the entire service to letting Elizabeth sing on stage. Sometimes others sang with her, sometimes she sang by herself. Some of the kids wrote notes of encouragement on the white boards and they all watched her. And they told her once a week she will get to sing. She was so happy!!! She talked about it for days! How happy my heart was to hear of this!
That’s how it is to be the mom of a child with special needs, one day my heart is broken, the next, I’m walking on sunshine. Although as a parent to any child there are definitely highs and lows, it seems, for me with this precious child, that the heartbreaks are more often and, thankfully, the triumphs and the miracles are more often too! There are desperate times, lonely times when no one else understands, confusing times, amazing times, and so many happy times!
Elizabeth has been through a lot in her life. I hope to post her full story on here soon. When I was pregnant with her she was diagnosed with Hydrocephalus. It happens when there is a blockage in the brain and the fluid that normally travels around the brain and down the spinal column gets stuck in the head. She was delivered early and the next day had a shunt placed in her head. The shunt drains the extra fluid out of her head and down to her abdomen. After one shunt revision at a month old she did great until just after a year old. She started showing signs of a shunt malfunction, like terrible headaches and throwing up all the time. It got worse and worse for 9 months. During this time, the doctors couldn’t figure out what was wrong with her. They tried so many different procedures and she took many different medications and even had major surgery. She was in pain and suffering for 9 months, to the point of death, with no answers from the doctors. Then the problem was figured out too late. It turns out that it was all caused because her shunt was not in the best spot and was not draining the fluid off her brain the way it should have. They put in a new shunt but because of the built up pressure in her brain she suffered brain damage from two strokes. She came out of it completely blind with a body that didn’t work and a mind that had to relearn so much.
After that time we watched her display so many miracles! Over days, months and years, she started talking again, her sight came back, she learned to walk, her body healed and she was able to do many other things. I’m trying to give the short version here, so I can’t share them all. Since that time she has been diagnosed with cerebral palsy (brain damage), and she struggles with walking and balance. Her left side is weaker than her right. Elizabeth has short term memory loss, and is developmentally behind kids her age. A few years after the strokes she started to have seizures, which she still has from time to time. But, in spite of it all, Elizabeth has grown into a sweet and kinda sassy 12 year old.
I’ve learned and grown right along with her. God really does use the weak to lead the strong. So I want to share a few ways I have changed since I’ve been gifted to have this precious little girl.
I have become thankful for weird things, like stepping down off a curb and dirty shoes. I have 6 other children besides Elizabeth (she's in the middle). I love each and every one of those precious lives. I have watched some of them grow into beautiful adults and some still have a long way to go, since they’re only 3! There are so many little things that I have missed with the other kids, not because I wasn’t paying attention, but simply because it was normal and natural for them to accomplish them. Things like stepping down off a curb. Elizabeth worked for years and years at physical therapy and at home to have the skills and confidence to let go of my hand and step off a curb by herself. She is still so proud of herself for doing this. She’ll still call me when she reaches the bottom step of a set of stairs just to have me watch her step off unassisted. It still takes my breath away. There are so many little things that she has learned to do over the years and each one is a miracle.
And thankful for dirty shoes…Before Elizabeth had suffered the strokes (2 days after her second birthday), she had not learned to walk yet. She could cruise along furniture and was getting close, she even took one step unassisted. But, that was it. She had the strokes and lost everything. Since her birth, she had to be carried. Even after the first two years of recovering from the strokes, she had never been able to do many things other kids were able to do, like play outside. Yes we carried her out there to do fun things, but she had never been able to strike out on her own. She had never been able to do things like kick a ball, chase lighting bugs, or run in the waves on the shore, she always had to rely on us. When other kids would play, she would just sit there and watch. That broke my heart. How many times I had cried out to the Lord for her to be able run with other children. And because she never walked her shoes were never dirty. I always noticed her perfectly clean shoes. One day, she learned to use a walker. It started slowly at first and she actually hated it, but over the days and weeks she got better. She loved it and the freedom it brought. She was able to start running. And eventually she learned to walk without her walker! All her life her shoes had stayed like brand new, because they never touched the ground. Today, her shoes are dirty. She has dirty shoes. I praise God for dirty shoes!
For me, going through deep suffering, watching my child sick and hurting for months and having no answers, or being back in the hospital for days/weeks/months, normal days still feel like holidays. I have reached the point now that I am in awe of how good my life is. Sometimes I open up the curtains in the morning and see the beauty that surrounds me and the beauty within my home and I feel like I have joy bubbling up inside me from the thankfulness if feel. Just working around the house or watching a movie with my family sometimes still brings tears to my eyes for just how wonderful it is to be together. I live a blessed life! God is so good!
"You turned my wailing into dancing; you removed my sackcloth and clothed me with joy" Psalm 30:11
When I was a girl I never wanted to cry. I grew up in a family surrounded by four brothers so I had to be tough. If I cried, they laughed at me. I wanted to be strong and I hated crying. When kids cried at school, I thought they were babies.
As I got older, I would cry sometimes, but only at night. And only in secret. I went through some pretty hard times and it felt good to cry.
When I grew up I noticed something, other people cried. When someone was hurting, people would cry with them. Sometimes they couldn’t do anything else for them, but they could hold them and cry together. I was so moved by that. But I couldn’t do it, the tears wouldn’t come. I also remember watching my good friend at church, when we would be singing praises to God, she would have tears running down her face. I wanted my heart to be moved like that, but it wasn’t.
That’s about the time I found out that I was pregnant with a baby diagnosed with hydrocephalus. It was so overwhelming. I remember a few days after hearing that news, I was sitting in the rocking chair in our living room just pleading to the Lord for her. The song “How Great Thou Art” came on the radio. Tears just started rolling down my cheeks. It felt so good.
The pregnancy and delivery was a hard and uncertain time of our lives and my heart was broken over and over. But once she was delivered and doing well, things got back to “normal” and I drifted back to towards being hard hearted again. Then we faced the beginning of the hardest time of our lives, for 9 months Elizabeth was very sick and we (and all the doctors) had no idea what was happening to her. Nine months of almost daily watching her suffer, holding her in pain, begging that we would find answers. My heart was cut so deep. I cried almost everyday out of the sorrow and grief that only a mother of a sick child knows.
Other tears came as well during that time, tears that came from a heart of praise. I would read the Psalms and I could feel the depths of suffering experienced and I could empathize. I would cry at the deliverance of others and the faithfulness of God in my own situation. I would read the word of God and His promises in there and just be in awe. I remember thinking, “God, why are you so good to me?”
Elizabeth ended up having strokes on both sides of her brain because of an overlooked shunt failure. She lost her ability to do everything and went blind. Over time, she came back from all of that. In the ten years since that time, Elizabeth been through more hospital stays and has seizures from time to time. But my heart is forever changed. I laugh more and cry more, sometimes from sorrow, but mostly from joy. I can be listening to the radio and find myself crying. I am just in awe of what God has done and I have a thankful heart that overflows in tears. I am no longer proud to be tough, I am humbled and grateful that my heart can feel. I can hear someone else’s story or see their suffering and I cry with them. Steel is stronger than gold, but which is more valuable? I learned that though my heart is more tender, it is more precious than before. Praise the Lord!
"I will be glad and rejoice in your love, for you saw my affliction and knew the anguish of my soul. You have not handed me over to the enemy but have set my feet in a spacious place." Psalm 31:7-8
I'm more… Steadfast
This is one that I am certainly not perfect at, but I’m better. Much better. Why does it take hard times to peel away the dead skin from around my heart? Why does the complacency settle in when all is going well? Why is the natural drift toward isolation? Why can't I just draw close to God and stay there? When my world is rocked or turned upside down, I hold onto to Him for dear life that He feels so near. He is my anchor in the storm! I love being in the shadow of His wings. I love being so near to Him, when I let down those walls in my heart, I can smell His scent, like morning rain, and feel His touch, helping me to be strong. I want to stay that close to Him always instead of just during the hard times.
After going through such desperate times, from the times in the hospital and recovery, to all the hard times and years since, I have learned so much about the faithfulness of God. He gently helped me overcome my fears and taught me to trust Him. When I had the darkest of nights as my child has almost died and He was there or when we prayed like crazy for months and months for her sight to be restored and it was, trusting him to pay a bill or get through the next hard time is easier.
I know He is always with me. God has used my daughter to help to me let go of the “control” that I think I have in my life and has taught me to trust even more. God has used her life to shape me into the person He wants me to be. It hurts sometimes, but I have learned to be steadfast even when it hurts. I wish I wasn’t so stubborn and I’d learn things quicker and easier. I know that He is a good God and didn’t intend for her to struggle, but He has used her struggles to shape her life and mine.
Throughout all that our family and our sweet girl have gone through I have learned much and my heart has been changed greatly. God has used her to fix in me what I didn’t even know was broken. I am more tender, going from having a frozen heart to a heart of flesh, a heart that feels easily. I am more thankful, even for little things like dirty shoes. And I’m more steadfast, as we have overcame odds when we didn’t have a chance. Plus I've grown in so many other ways! I know that many of you are suffering right now. I am amazed to see the overwhelming circumstances in so many of the lives of those around me. I just want to remind you that you have a God who knows your name and feels your hurt. I want to encourage you turn to Him no matter your situation. God is faithful! Thank you Lord for this precious life in this sweet girl you have given me!
“Every good and precious gift is from above,” James 1:17
Here is a video of our sweet girl as she was learning to sing (when she was little) and as a grown up 12 year old. She still sings all the time!
Thank you for following along with me on this journey!