I'd like to share the story of our middle child, Ivy. First I have to go back to when our first child was 9 months old. We found out that we were expecting another baby, who we would later name Sam. We lost Sam through miscarriage, which was by far the most excruciating experience I have ever lived through. A few months later, we were excited to learn that we were expecting again. I hadn't mentally healed yet from the miscarriage and I could not feel connected to this new baby. My fear was deeper than I had ever known fear to be. I was incredibly happy, but the pit in my stomach about the possibility of losing another baby was too much. With each of our pregnancies I have had to take progesterone to help the babies grow. We knew right away that my levels were low with this new baby so I took the progesterone and fought away feelings of fear and despair, worrying that it would be all in vain. This new baby didn't move much, even around 6 months along. I was still to take the progesterone, which made me feel very ill. I had a constant mix of emotions from worrying about losing another child, to wanting to stop the progesterone and then worrying if I stopped taking it that it would be the end of this baby. It was beyond exhausting. I couldn't relax and enjoy this pregnancy until I was well into my 7th month. By then I felt like I had such little time to prep myself for another child, but I was incredibly happy to get ready for our family and home to welcome a new baby.
A couple days before our due date, we were eating dinner when our nearly-two-year old stopped, looked up at me and stated, "Baby come." I happily nodded and said that yes, our new baby was going to be here soon! That night I went into labor and by the next morning I was holding our sweet babe. We chose the name Ivy Christine Elisabeth. "Ivy" to represent life and growth (and Matt's favorite reason - it's a movie character we both like); "Christine" in honor of my mom; and "Elisabeth" in honor of Matt's mom. Our oldest, Gabi, was over the moon with excitement about becoming a big sister. Life was perfect.
Speed forward to Ivy's 5th month. We had been noticing that she wasn't reaching any milestones. She was a happy baby and had the most amazing eye contact and her giggle could brighten anyone's gloomy day. But she wasn't rolling over and she definitely wasn't trying to crawl. She suffered from major acid reflux and we were constantly fighting massive spit ups. She also had no favorite toys other than things that lit up or played music.
Jump forward again to 11 months old. Ivy still wasn't sitting up well, and hadn't crawled yet. I knew I had to reach out to her doctor and request an evaluation. He wanted to wait. I didn't. So I contacted our local public school system's Early Development Network. A group of specialists came to our house and evaluated Ivy on every major area: motor skills, cognitive skills, language, etc. They felt that she was delayed in each area and recommended that we start her with their services. We were so relieved to have resources and something to hold on to with hope that she could get the developmental help she so desperately needed. Ivy was still a bubbly baby and brought so much joy to our family.
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| "How do I look?" |
With the amazing help of the teacher Ivy had been assigned, she slowly began to learn the skills she needed. Eventually she rolled. It took a long time to get her there, but once she decided she was ready she rolled across the entire length of the room! It was the same thing with her crawling and walking. Each stage seemingly took an eternity to reach, but when she reached the milestones, we rejoiced as if they were the most wonderful thing on the planet.
We did chromosome analysis, had an MRI, growth hormone evaluations, and met with a developmental pediatrician. Everything came back normal, except for the developmental pediatrician saying she was delayed. Thanks! We knew that. Moving on.
Then things got really rough. Ivy's whole life had seemed to be a sensory-sensitive life. She would rock back and forth for minutes upon minutes. She didn't want us to hold her hand, or rather she didn't ever have that baby reflex to grasp one of our fingers. It's all very much a blur to me know, but she started to scream and screech.
All the time.
It didn't end.
It was morning, noon, and night when we were home. Crying and screaming. We were losing our minds. We would joke that if we recorded her screaming, the government could use it to get answers out of terrorists.
The screaming and screeching continued on like this for well over a year. Was it 15 months? Eighteen months? It was a long time. And I was frazzled. I'd often loose my cool and couldn't concentrate any more. Gabi couldn't be heard and I couldn't listen. I wanted peace and quiet. All any of us could figure out was that she was trying to communicate her wishes and needs and we weren't able to figure out what she needed. Sometimes she'd just scream for the heck of it, to see what it felt like. I feel awful for those number of months where she felt so angry and frustrated and upset.
Shortly after she turned 2 years old, she finally took her first steps alone. I think we cheered and shouted so loudly, I'm sure the neighbors thought we had lost our minds. Then her poor little ankles started turning inward and she needed braces, which turned out to be one of the best things she received.
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| Cute new accessory! |
We've gone through various fairly short stages of her inflicting self harm: at first it was pinching and grabbing her skin, then biting herself, and now it's slapping herself on the head. Sometimes it's out of frustration, but other times it's a sensory input/output need. Things here seem to be slowing down, thank the Lord! It's maddening to watch your child hurt herself.
Now at 3 years old, she's aged out of the Early Development Network and transitioned to the public school's preschool program. She attends every day for half days and will learn to feed herself and essential communication skills. She's still very much non-verbal, except for some new sounds and a couple words that have been used since this summer. She very clearly says, "Mom" and is trying her hand and a few select animal noises. She can now point to a picture in a book when asked to find a certain animal.
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| Waiting for her school bus on the first day of preschool. |
This morning at breakfast, I was asking our 5 year old about Pete the Cat, a story her class had read in school, and Ivy "meowed". She didn't have a picture of a cat in front of her. Proof that she was paying attention and understanding the conversation!
There have been countless times that I have felt like all was a loss, that this child would forever be so far behind and never speak. I felt too often the raging sense of anger and frustration that God would make such a sweet child so behind and have life-long struggles. I'd hear her doctor tell me that she'd most likely never fully develop language skills or cognitive skills, and although that made me livid, deep down I also felt defeat and that it could very well be the truth. My calmer better half, Matt, can tell you how many times I had hot tears in my eyes and shook my fists at the Heavens. I had fallen in a hole of self-pity and worry.
"Why do we have a child like this?!"
"Why would God make a child that screams every hour of the day and hurts herself??!"
I had forgotten to turn it all over, offer it up, and just LOVE. My husband was (and is) a wonderful example of having the ability to just love for Love's sake. He never sat there stewing about how hard it was, and he didn't get mad because our daughter wasn't the text book child.
My hopes and dreams of what our little family was going to look like were repeatedly dashed. I was so negative about how I felt stuck with not being able to go anywhere for fear that Ivy would have a melt down, not to mention that even though she could walk, she was far from steady and needed to be carried most places. It's tiring carrying around a 40 pound child all the time!
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| Running! |
Slowly but surely, Ivy has made great strides. Each of her milestones has come and each has taken excruciatingly long times to arrive. Life is far from easy, but it's getting better. She's much calmer and happier now. Her communication is slowly getting better as she remembers to use her sign language. This late summer she's had a burst of development - she's making animal noises, actively looking at books and recognizing animals, and she's not only walking but running and she's a fast runner! She's one of the sweetest souls we know and adores her sisters. Through school and receiving therapies and extra special ed help, we have no doubt that one day we will hear her speak sentences and describe things. Until then, I will hold on to the positives and have them buoy me through the rough times that I'm sure we'll go through.
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| A heart of gold |
The last three years have been a painful lesson in letting go of my plans and expectations. I've struggled to accept that I'm not in control and I don't have the best plans. I can be much more relaxed and cheerful about our life and Ivy's life when I ask God for his guidance and let him steer the ship. How exciting it has been to see her grow and it will only get better and more so as she continues to grow.
God allowed us to lose our Sam so that we could have our Ivy. Through her own struggles, God has taught us new skills as individuals, patience, and skills in parenting and communications. I've learned to open up about Ivy and accept the help she needs through the Early Development Network, and I'm sure we'll continue to rely on her new team of specialists at her school. I/we cannot do this alone. Talking with other parents in our parish has also helped settle any anxiety and fears. Just knowing that there are other people in our faith life that are compassionate and understanding has gone a long way in easing any discomfort we've felt when Ivy screams during Mass. Talking with other parents of children on the Autism Spectrum has helped out tremendously. Ivy has no diagnosis yet, and maybe she won't. We'll have to wait and see if that happens or is even needed.
Parenting is hard enough. Parenting a special needs child is even harder. There is really no way that we could ever give Ivy all that she needs without the help of her school, and we definitely couldn't have come this far without her EDN teacher. I've fallen down many times on this road of parenting Ivy. I have no doubt that I will keep falling, yet, there have been and will be countless opportunities of growth for all of us.
I have no doubt in my mind that God has amazing things in store for Ivy - much better than anything I could ever imagine.
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| How Ivy likes to sit a lot of the time |
