When I found out Maxwell had down syndrome I was sad! I always felt as if you can’t or shouldn’t say that! Honestly it did not change how I feel about him or the joy I felt to finally have a son because I have always longed for a little boy!
But what is harder than admitting I am sad? Figuring out WHY I was sad!
It was not until I heard the experience of a mom who has a son with cerebral palsy. She said she felt that she grieved the son she had envisioned having! I finally felt relief! I could finally explain my sadness! I finally knew for sure that it was not that I was disappointed in who he was, it was just simply that I had to dream of a new life with him. It may be tough and sudden and unexpected. It will take me time, something I do not feel is on my side right now! And every time he misses a milestone I will need to take time again to grieve. Actually my husband and I will have to take time to grieve. And we will! But we know still how fortunate we are! We know that he is so fortunate to be as healthy as he is! There were so many possibilities of more health problems and right now, he doesn’t have any of them!
For years I envisioned a blonde hair blue eyed little boy. He was a little tank! He would have his dad’s memory and smarts! I would fear the day he realized he was smarter than me! He would love all things cars, machines and sports – but only because of his uncles, sports was not his dads big thing! However every year he would go hunting with his dad. He would be sensitive and loving and spiritual. Yet brave and strong, too brave! Everyday I would fear him getting hurt! He would love speed just like his dad and as much as his dad understood, there would be fights about speeding tickets! He looked great in a suit but most of the time wore jeans and a tee shirt and was covered in dirt or oil! When he finally fell in love he would be the perfect husband to her! But most importantly to me, he would be my mamas boy! But not too much that it would be weird!
I know a lot of these things we could still have! Especially him being my little mamas boy! When he looks at me, I can feel how much he loves me! But the hardest part is the unknown! Right now I don’t know what his future could be like! The same could be said about any child, however there are so many negative possibilities with down syndrome, it is hard to not to worry about his future EVERYDAY! Now I find myself looking into his future and worrying about him being judged or looked at funny! I fear him being treated different or compared to his sisters. It devastates me to think about the first time he cries because he realizes he is different or anything but perfect or because someone picks on him. I question if he will ever fall in love or will be loved back! I wonder if him and his dad can still obsess about cars and machines. And every two months right now I fear that his blood work will come back and not be normal! Then I will have to worry about my son, my perfect, beautiful, wonderful son suffering from cancer!
When I look at him I still see that little boy I always wanted, because he is! I just now need to start dreaming of a new life with and for him! Nothing can take away the happiness he brings me! There is already so much I look forward to experiencing with him. But I now know it is alright to feel sad at times. Because no one wants their kids to suffer in any way! Do I wish he or all my kids could be perfect or never have to fear anything! Of course I do! Every mother does! But that is just not a possibility in this world today! However I do not think anyone should feel guilty for being sad if their kid has a disability or a sickness because everyone wants a perfect life for their kids!
I no longer feel guilt for feeling sad at times. We will have a wonderful life with him! He is going to make us laugh and smile every day! He will be like any other toddler who drives us nuts at times! And him and his dad will bond over anything that brings him joy because it will bring his dad joy! As a couple we will grieve the sad moments but celebrate the happy! Because I feel that there will be more happiness in his life than anything else!
I share this because realizing this has taken a huge weight off my shoulders and if there is any chance that there is a parent out there feeling the same way, maybe they will find this and feel the same relief I did!