So many of you ask how Thomas is doing and tell me that you read my blog when the opportunity is present, so I thought I should give you all an update. I am grateful to each one of you who take the time to read my blogs. I really have no organization to them, but I sit and open my heart as the words flow to the page. I suppose there are no rules in blogging as to how long, how often, etc. I am just following my heart and your lead as our support system. Thank you, you mean a lot to me.
Thomas is fine as he really doesn't know that there is anything wrong with him, so he is running and playing and trying to keep up with his older brothers the best he can. We are still going to physical therapy about every two weeks and we are trying to work on his strength and balance through some exercises. He got his first bad boo boo under his eye falling in therapy, but its practically all healed now. Its tough to watch him fall so often as a mom. We even try to make it a fun game where when he falls we laugh or make a funny noise. Most of the time he can catch himself pretty good so he doesn't get hurt, other times he is too close to an object and hits it. You will often see bruises especially on his face and forehead area. The great thing about kids is they are so resilient and heal so quickly. Sometimes it makes me feel bad though especially when we are out and about and he attracts someone's attention and they ask what he did. We had lunch today and this lovely lady took a liking to Thomas and just talked with him and smiled and then asked about his head. I just lightly explained he falls a lot and she replied that she was sure he would grow out of it. Sweet to say. . . but not sure that is the case. Nothing about Thomas is something that you can grow out of unfortunately, it is what it is.
So, while I wait for the appointments to come up which is very difficult to do there still isn't a day that goes by that I am not doing something related to Thomas and his health care. Calls from doctors, PAs, insurance, etc. I was relating to another mom tonight who deals with similar circumstances and it really is taxing on someone how much it takes to make all of this happen. The calls come at the craziest times too. Friday night I was working a wedding at the church, running back and forth between the kitchen, the Bride, the sanctuary and going down the hall my phone rings. It is the nurse calling to talk to be about having the MRI order for Thomas' brain being sent to Egleston and that they should be calling me next week. Okay thank you and back to work. Its not until later when I get to sit down that it sinks in that I had a phone call about the appointment to put my baby to sleep so that they can get a detailed picture of what is going on inside my babies brain. The potential to find things that didn't develop correctly or aren't right. I quickly have to drum up my inner voice to calm the anxiety and remember who is in charge. All will be fine and we will tackle anything we need too. God will give me what I need when I need it and I am good with that.
I have been searching on the Internet for others who have children like Thomas in some manner. Its something that I do when I don't feel like I am doing anything proactive. My findings this week were fabulous!! I was able to find another mom who has a son with DS and hearing issues. She was able to tell me that at age 9 he is a happy boy and is enjoying his life to its fullest! I also found a 20 year old girl who suffers with similar issues as Thomas and she too was able to share with how fulfilling her life is and how she had struggles throughout her life but nothing that she couldn't overcome. I know Thomas is going to have a great life and that these obstacles set before us are not something we won't be able to overcome and he will never know anything different. But finding others who walk the same path as you gives you more hope and assurance that what I am doing is the right thing and the choices I am making are going to benefit him in the long run. As humans we just like to have that connection for the other person to listen and relate.
Monday we have an appointment with the Orthopedic surgeon. I am very curious to ask him what he thinks of the neck fusion and what does he think it means in relation to his other anomalies if anything and what does he expect to see on the MRI that is scheduled for December 28th of his spine. So, I am ready to take this one on.
In the meantime, we are going to get away for the weekend. We are headed to a cabin on the lake in South Carolina for some good family time with the outdoors. I think it will be a good time for us to just be a family and let our spirits renew and come back prepared for Thanksgiving. Such a wonderful time of year to stop and reflect on those things that we are so grateful for. Never doubt that I count my blessings daily and that I now among many things that Thomas is a blessing not only to us but to all that get to know him.
In closing I have to mention that God took a childhood friend of mine home this week after her long battle with Cancer. She was my age with three young children and a wonderful husband. It weighs heavily on my heart for her family to no longer have that light in their lives and I still have the opportunity to allow my light to shine for my family, friends and all of those who are around me. It is my prayer that God will help me everyday to be the best mother, wife, daughter, friend, granddaughter, neighbor and that in all I do let His will be done.
Proverbs 3:6 "in all your ways acknowledge him, and he will make your paths straight."
Philippians 4:6 "Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God."
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