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!
It is easy to give in to sadness…
To the people who think we are holding it together, we are…most of the time. We have had lots of people that have helped us navigate the system and have received advice from those who have gone before us. There is a huge learning curve and we are always stumbling over our own feet. We just can’t dwell on that; we have to get up, brush ourselves off, and keep going.
Read: The Science of Happiness [1]
Some may think that our lives look tragic from the outside, but they are not. Our lives are filled with joy, and celebration. If we think about the future or our situation too much then yes, it is easy to give into sadness. We need to live in the moment and celebrate every little accomplishment, because for our child, it is not little. When you see your child struggle with something for so long and then they finally get it, you want to shout it from the roof tops. You want to take a picture so you can remember it forever. I promise that if you go to a Special Olympics event, you will not see a single frown; you will only see some of the happiest people on earth and you will be changed forever.
As a special needs family, your future will likely not look like a “normal” family’s future. Your future may not turn out how you thought it would. Your future will not be easy. You will start to see the world differently than most other people. I can’t promise you that it won’t be filled with heartache or tears. It will, however, be filled with a joy that you can’t find anywhere else; it will force you to realize what is really important; it will make you appreciate the little things and it will introduce you to some really great people that are in this struggle, too. It will also fill your heart so full of love that it just might burst.
[2]
Tracy Felix: Tracy blogs about her life and challenges as a mom to a son with special needs. Her blog has provided a forum for parents to get support, share ideas, and learn. You can connect with her at www.facebook.com/xlinked1 [3]
Image©Sammis Reachers /Flicker.com
Helpful Articles
- Handling Your Child’s Diagnosis: Six Things Parents Should Do For Themselves [4]
- 8 Ways to be a Great Advocate For Your Family Member With Special Needs [5]
- Coping with the Life You Never Imagined [6]
- Developing Your Own Network [7]
- Independence and Self-Advocacy [8]
- Family: Where Life Begins & Love Never Ends [9]
- Why Family Time Matters! [10]
- Self-Confidence Begins in the Home [11]
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- I Do Not like Being a Special Needs Parent and That’s OK [15]
- Being United, Pampering, and Taking Care of Ourselves [16]
- Financial Planning: For Those Who Are at the Starting Line [17]
- Baby Steps Tips for Encouraging Your Child Toward Independence [18]
This post originally appeared on our January/February 2015 Magazine [19]