I was listening to a pastor friend give the invocation at a dinner this week and he remarked about the man who was being honored as being thankful for all the gifts in his life and that every good and perfect gift comes from God.
James 1:17 Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.
The word “perfect” has always caused a hitch in my breath along with the word “normal” but for some reason in this prayer ~ and I actually think it was Scott’s gentle voice & tone which caused me to truly think on it ~ I realized that all of my children have been good and perfect gifts for me in different ways.
15 is still a challenge to my balance and there are many outside forces that continue to disrupt but I have a pretty good handle on that and realize that one day he will fully understand that those forces aren’t the pretty picture he is currently absorbed in.
The twins are hysterically funny and every single day they amaze me with new skills and language. They are blessings in so many ways and I am so thankful for them that the exhausting days are worth every single second of hard work.
Life with a child with special needs brings so many challenges and the thought process that goes into a day can often be disrupted by twinges when I hear or read the word “normal” or “perfect” in regard to children. Obviously no one is perfect and I think most people would say that normal is a term relative to an individual path.
Larkin has a new stroller/wheelchair that has changed our life. She can’t sit in an adult chair if we go out to dinner and a high chair isn’t appropriate either. She can’t walk long distance (or short depending on her day). We haven’t been able to enjoy a family outing for a very long time because our time was always spent managing her. Then you throw in a couple of babies you have 2 parents in a sweat and it was just too much work to go out of the house.
The stroller wheelchair allows her a place at the table, a ride that supports her body and leg length, and a resting area. We can relax knowing she is contained but more importantly that she is physically comfortable. We feel more connected with our community now that we are able to move about more freely with her.
But I walk past that stroller and there is a growing pain just like her walker was in the beginning. It is the hitch in my step and breath that still momentarily jolts me that this is my life and the stroller is a part of it. The equipment that is a part of this life whether it is the suction machine, oxygen, medications, walker, wheelchair, hospital bills, doctor visits, therapies, fighting with insurance companies, advocating for others, advocating for mine, and writing IEP’s, those are the items that can give me a long pause as I stare and think …. this is life.
It has been eye opening for me to navigate the outside world with Larkin. Doors that don’t open easily or are heavy, not being able to eat out as a family prior to her chair, visiting local attractions specific to children that are not accessible, sidewalks, curbs, ramps, and grocery shopping. The list is endless and are things we take for granted.
Things that can cause a parent to feel overwhelmed and grief bubbles to the surface. It doesn’t last long (well for me anyway).
One of my best girlfriends father is dying and she blogged last week about remembering what is important. She wrote:
first day of the rest of your life
If you are mad, get over it.
If you are jealous, get over yourself.
If you are confused, find some clarity in your gut.
If you are afraid, put one foot in front of the other.
If you are weak, remember that strength comes from within.
~ Laura Zander Berg
I am reminded daily to live life with intention and purpose. I have a finite amount of Saturday nights and I will spend them with people I love and who love and challenge me to be better.
Larkin continues to enjoy stable health outside of the typical illness stuff all children have. She has been swimming most every day and loves the water to the point that I think she would live underwater if she could.
The pressure of the water allows her to feel where her body begins and ends which is so freeing for a child with low muscle tone
The noise of the world is shut out underwater and peace is found there
She laughs, babbles, and flips like a dolphin enjoying the sunshine
I smile and watch in total amazement the perfection I see in her
Ask any parent to a child with special needs that our love for our child allows us to see them and their soul beyond any part of equipment or diagnosis.
We see the good & perfect gift that is our child
God knew what He was doing ~ He changed me and my life through her for the better. My God who does not change like shifting shadows
I am a giant imperfect work in progress
She is a masterpiece
Photos below courtesy of Donita Hillman Jacobson photography