I recently had a revelation that it is TOTALLY okay for us to modify our life to fit our special needs life and family — without leaving the special needs kids out! Yes, it is harder than going to an event alone or just bringing our “healthy” kids. But we are a family and we have special needs.
There are some events where it doesn’t make sense or is not reasonable to bring our kids, and it gives my husband and I an excuse to interact with other adults without our kids there. Just being honest here, our disabled kids have some symptoms that are just plain “gross” to most people (or anyone that is not used to them), like chronic vomiting and making gross noises. We feel it would be inappropriate to bring them to a restaurant or a formal event, where their medical needs would be very distracting and even considered disgusting to some. We usually just choose to not go to those events, but some are important enough that we choose to go and leave our kids home. Otherwise, we rarely leave all of our kids and do anything as a couple without kids. We prefer being with our kids and think that spending time as a family is important.
Acceptance of the special needs life.
So, I realized that we should not be upset that we can not do things like other families or that we can not do things like other people expect us to. We don’t just have some minor special needs, we have two fully disabled children with chronic illness, plus several other children with various special needs. We need to stop worrying about what others think about our choices to attend or not attend events. This is our special needs life.
We need to just “own” that, and live the life we have, because we can’t change it and we can’t live a so-called normal life. It’s obviously what God has given us! He knows best! I fully believe that our kids will turn out perfectly capable of interacting with others and living meaningful lives as adults, even though we do not attend every event, party, or outing that we get invited to. I sometimes feel bad that they don’t get out and socialize regularly, but then I realize that that is just mainstream culture talking and not what truly matters.
Our kids actually do great when we are in large groups. They are still just curious kids, but they are quite respectful and friendly. We strive to teach them to embrace differences, to know that God created everyone differently for His purpose. They don’t care what color your eyes, hair, or skin are, or what your disability may be… they don’t see differences as inferior to themselves. They love people. To be honest, they love people so much and are so outgoing, that my introvert self can get a little nervous taking them around large groups! They greet everyone they see and hug everyone around them! But, I love who my kids are. I love that they love others. And they are who they are, in part, because of their medically needy-special needs siblings.
I don’t want my kids to think they are deprived because they don’t have the same life or do the same things as others. I don’t want them to think they are entitled to something else. I want them to embrace the life we have without a negative attitude about our adjustments or feeling sorry for themselves. I want them to see our disabled kids as blessings, not burdens! These are hard lessons to learn, but I think our kids are learning them more eagerly and easily than my husband & I. It is actually outside influence that threatens to shatter my kids’ ability to accept their life and embrace disabilities with love and compassion.
The reality is that God knows what He is doing. He knows who He is shaping my children into and what they will be as adults. I think that their disabled siblings will play a major role in their life choices and careers. I think they will be more compassionate, more intentional, and better people for having their disabled, chronically ill siblings. I know that my husband and I are definitely better people for having known all 8 of our kids!
I know that we need to be less fearful as parents and more fearless of living our special needs life to its fullest! I pray that my husband & I are both able to fully embrace our life (as it is) and bloom into the family God wants us to be! I am praying that we can show our kids, by example, that our joy is not based on our circumstances!
To those of you without special needs: be more understanding and less critical of special needs families.
And to those of you with special needs: trust the Lord, He has chosen you and your family for His purpose!