The Future of a Special Needs Family
Our son was not given very good odds of surviving or thriving, but, he is doing both now! He has x linked hydrocephalus and we were told he might not make it past birth. The one thing the doctors didn’t know was how much of a fighter our son is. Now, at 2 ½, a child that “wasn’t supposed to live this long”, recently took another huge step in proving everyone wrong.
When we first brought him home, he couldn’t lift his arms up very high, his muscles were too tight and it was painful. The first 2 years of his life were spent stabilizing basic life functions like eating and breathing. Now that he has mastered these skills, we can work on other things like arm movement. With a lot of stretching, and just a bit of practice, he now lifts his hands up over his head, rubs his eyes when he is tired, plays with his ears, and just this week he pulled out his pacifier and put it back in his mouth! And he does this all on his own!
We have to find a way to get it done!
At first glance, it may look horrible to most people: a future filled with doctors, therapists, equipment of all kinds, difficulty doing anything and maybe even death of their child. To the outside world, it may seem impossible to live a happy life. People say things like “I could never do what you do; I could never hold it together like you are, or, it takes a special person to raise a child like yours”.
While all of this is true, it is not the whole picture. Yes, our lives are filled with more doctors and therapists. Yes, we can have more challenges in everything we have to do. Whether it’s eating by mouth or going to the store, we have to get creative and find a way to get it done. Some days we are frustrated at supply companies, the government system and other people, but that is not every day. We may also think about our child being laid to rest long before his time. That is just part of our worries. No one should have to grieve the death of a child, but on some level, it makes us appreciate EVERY single moment we have with them.
To the people that don’t think they could ever do what we do, I think they could if they had to. I never thought I would have this life, or be able to make it work, but I think I am doing pretty good so far. When you are backed up against the wall, you can be amazing!
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