Life with Special Needs - the Challenges
One of the more vulnerable posts I've written about Israel was this one about his equipment and how I dealt with how Israel was viewed by others.
I wish I could say that Israel's progress recently has been "enough" for my heart. I honestly have to continually remind myself that God is sovereign and His plan and purpose for Israel is much bigger than mine. The truth is, having a child with special needs means that we are continually being a part of a story - it isn't over yet and we don't know what life will look like in the future.
Being Israel's mom means that I am his advocate. I have to be the one to fight for the services and resources that he needs. I also can't give up on him. We have to be intentional about doing the exercises he needs, even if that means I'm getting hit in the face while we do them. Israel needs weekly therapy that requires time and finances and shifting Edith's nap schedule. Right now we are working with his early intervention team to plan for when he ages out of EI services and switches to the school system at age 3. I can't believe that I sat in a meeting to enroll my child in special education. It was surreal and humbling. I ache for Israel's future and hope that he is developmentally "normal" one day. I don't want him to be made fun of by his peers. I fear for the day that he sees that he has challenges and that he is different.
I love, love, love Israel's school. He attends the cerebral palsy center daycare, and the teachers are attentive and trained to work with kids like him. Several times I've gone to pick Israel up from school and all of the kids are on the playground - and Israel is sitting in a chair watching them play. He can't swing or run or play on the monkey bars. He's just sitting there. (I've also come to pick him up and seen the teachers playing with him, and I know that they stand him up with toys out there too- I am not complaining about the care he gets there! I just know there are times where Israel's limitations leave him out of what his peers are doing). He also gets upset by extreme temperatures, so ice cream or Popsicles are not good for him. When all the kids line up for Popsicles, Israel doesn't want one. It's just another example of him being different- and as a mom that hurts sometimes.
Not having Israel's medical history and family history has proved to be complicated for us. Israel has had repeated medical issues that require bloodwork and x-rays and seeing specialists in various cities. This sweet boy has seen more waiting rooms and been held down for blood draws more than a toddler should. There are many times that I wish they could just take my blood instead of his.
Israel's adoption and our agreement with our adoption agency requires that we parent differently than others. We can't just spank Israel when he disobeys- we have to be creative in our discipline and try to uncover what the root issues is when he is upset. Things are never simple.
We've also got to deal with equipment. I'm counting the days until his new fancy walker comes in. I'm hoping that Israel will feel secure with this walker and that he will take steps independently in it within the year. We also ordered a stroller system that is regulated for travel so it can be strapped to a school bus. If Israel isn't walking by the time he starts school, then he will need a mobility device because the teachers will not carry him. I pray so hard that he will be walking by then and will not need a wheelchair or mobility device. It makes me tear up thinking about it! I am so hopeful that he will be able to walk.
It is hard to project what our future is. We always ask the neurologists and doctors what they think- but only time will tell. We have no idea of knowing when we will get more words out of him or when he will catch up. I pray that he does. But it is also a reality that he may live with us for a long time, and he may need programs as an adult to function in society and he may not go to college. We have to dream big for our boy, but we also have to think about his needs when we plan for our future. When we signed up to adopt 5 years ago, we had no idea that we would be saying yes to an uncertain future and a lifetime role of advocacy and professional hopers. But we would gladly do it again.
I cannot express enough what a privilege it is to be Israel's mom. I wouldn't trade him for any other child in the world. It is not always easy to parent him, but it is a gift to love him. He is so precious and I cannot look at him or think about him and not see the grace of God. Israel is a reminder of God's faithfulness to us. Israel is a picture of God's works being displayed. Israel is a scooting miracle and he bears witness to the earthly redemption of brokenness. I am honored to be his mom in challenging times and in the easy moments.