Most days I can pretend all is well. That I have 6 healthy children and life is going according to plan. The problem is that packages like the ones that arrived today force me to face reality. The reality that I am a mom, a mom of a special needs little boy. Today Leo's medical supplies for the month arrived. 6 cases of special formula, lots of syringes, microlipids, and the list goes on. There was an extra box this order. A box that actually made me smile until I did a little research. This box contained Christmas gifts from the supply company for Leo. A homemade hat, a fisher price toy and a homemade blanket. The blanket had a Project Linus label sewed into it. I googled Project Linus. It is a wonderful organization.
From their website- “As Charles Schulz’s Linus character from the PEANUTS® comic strip was comforted by his blanket, Project Linus strives to do the same and more for children who are seriously ill, traumatized, or otherwise in need.”
Leo received a project Linus blanket. I started to ask myself - “why?” Is he seriously ill, traumatized, or otherwise in need?
I was reminded of the fact that I push to the back of my mind on a daily basis- Leo has Wolf-Hirschhorn syndrome. By virtue of having WHS, Leo is considered “seriously ill” by some.
Things we were told before Leo came to live with us.
It has been estimated that approximately 35% of individuals who have WHS die within the first two years of life. Universally, children with WHS have severe or profound developmental retardation, however, there are many affected individuals who are able to walk and some that are able to talk in short sentences. It is evident that many patients seem to proceed farther than was previously thought possible. You can read more about WHS here http://www.wolfhirschhorn.org/
So why am I surprised that Leo received a blanket from Project Linus?
The reality is that I can't think about what tomorrow holds for Leo. Jeremy and I accept the fact that Leo will most likely live with us for the rest of our lives. Retirement without kids is most likely not in our future. And that is OK.
I can't focus on Leo's prognosis. I can only focus on what I have to do today. My day just looks different than most. I homeschool, I clean (most days), I cook, I get kids to their activities, but then I also administer feeds via a tube to Leo, I change his dressing, I clean,fill and run his feeding pump at least 6 times a day, I administer medicine, I am constantly going to specialists, I work with him and his therapists with the goal of helping him reach his potential.
I can't complain. We chose this. We said yes to Leo. Most moms of special needs kids didn't get a choice. I did. We could have turned down his file and no one would have thought any less of us.
Here's the thing- It isn't about us. It's about a little boy who needed a family, who happens to have a rare genetic syndrome. We are blessed as a family. Yes, Leo has changed the dynamics of our family. Yes, his special needs can complicate plans at times. But it isn't about me having an easy life. It isn't about us some day retiring to an island without kids. It's about doing what God has called us to do. It's about sometimes choosing to do the hard thing because you know it is the right thing to do. Life with Leo is hard on so many levels, but thankfully we aren't on this journey alone and as the poem goes, when there is only one set of footprints in the sand- It is then that God is carrying us.
So tonight, I might just snuggle up with the Project Linus blanket and thank God for allowing me to be mom to 6 wonderful children who are all special to me.
What is God asking you to do that is hard? We are not special. We are not super godly. God asked us to adopt Leo. What is God asking you to do that is hard? He will carry you when you need to be carried and who knows He might even send you your very own “Linus blanket” to comfort you when you obey and life gets hard.
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