I have been struggling a bit on the emotional roller coaster of being a special needs parent (specifically with a child who has greater medical needs) and being able to understand any of these feelings. As crazy as it sounds sometimes I wish that we had the support that we had back in the hospital. There were nurses who not only cared for Lydia but acted like my therapist. While they may not have understood what we were going through, they listened and they encouraged. We had the support of many families who were/are walking the same road as us at the Ronald McDonald House. We were actually in a safe and secure environment even when everything was crashing in on us.
Even though we are not in the "critical days" with Lydia, I feel like some of these days are the loneliest days I have experienced and very, very tough. Lydia is sick right now and we need to cautious. She does not have the reserves to fight off a cold like Ellen and Allison. We have to balance her fluids and eating and coughing and throwing up. It is natural to us now. But I can't express how lonely these days are spent rocking a child who is coughing and struggling. While she may not be like this all day; there are times that are horrible, these are the unseen battles that we endure daily sometimes.
Then there are the tough decisions that we make to split up the family. The Holidays are here and we are suppose to travel and see family. Lydia, when she is healthy, does not travel well to begin with. Is it fair for us to take a girl who is compromised and put her in a situation that she does not do well in? Is it fair to tell Ellen and Allison they can't see their cousins or grandparents? Is it fair for us to split the family up once again? What's the right decision? The tears flow because it hurts so bad, I don't want to walk down this path again. These are some of the unseen decisions that we constantly have to make.
But that is not the only thing, I hear those judging comments, I see the stares, and I feel the eye rolls. It seems like everyone can do a much better job of raising my child than I can. It seems like, at times, family and friends know better how to walk the life I walk. I have learned how to be silent (that is amazing task for me too!) because it is an unseen hurt to these people. But I find that I drift away from people and I lose relationships. That unseen hurt is so painful to me, yet others have no clue.
I know that not everyone wants to constantly hear about Lydia and our struggles, but I am unsure how to break away from it. This is who I am. She is so important to me and has changed me in some very profound ways. There are so many unseen lessons that she has taught our family and so many unseen things we have learned that are now part of who we are. I can't change that; that is just who I am.
There are so many unseen struggles from the outside eye. To get your child the therapy they need, to battle several children's ongoing needs and wants. To decide what bill to pay because the assistance, if you are able to get it never seems to cover the supplements, the therapies, the extra medicine, the braces, the special outfits, the special diet, the increased wipes or other supplies because of their needs. The appointments after appointments that cause a babysitter for the other girls, the extra gas to get there or that unexpected hotel room.
These are not complaints but rather an honest look into the unseen things that many special need (note: not all special needs have the extra medical needs, but my Lydia happens to, so that is the perspective I write from) parents go through. These are the things that add extra stress on top of caring for a fragile child. While Lydia is much like her sisters in many ways, there are other things that we need to concern ourselves with to make sure she is receiving so she has the same opportunities as her sisters.
There always seems to be a battle of the unseen things. As people walk by and judge so freely without knowing the story, without really understand that struggle that is being fought. Sometimes it is more than one can take. It is a lonely battle often times because many people don't see and then they can't understand.
One thing that I have been trying to do, is simply encourage. The gift of a note just letting someone know I prayed for them, a hug, a warm genuine smile, an unexpected card in the mail, a text with a Bible verse. These are very small things that can make a huge deal in the life of someone, especially one who seems to be battling the unseen. We can't understand always, but we can all encourage.
On days like these when I seem completely confined to a recliner, sitting in my bra and underwear (maybe TMI but this is a reality) because she keeps throwing up and we have both gone through several outfits, listening to her cry and struggling to find a way to comfort her. Longing for a moment to go to the bathroom or to shower; not even dreaming of a minute with just me. A simple unexpected note or pick me up can change the entire day.
After all, we are suppose to be a community helping each other out when in need. Sometimes we don't know we are in need until someone encourages us. Often times I find the encouragement from my daughter. But on the days when you feel like the world is judging you for the decisions you need to make for your child, when you feel like you are battling with everyone just trying to get what your daughter deserves, and you watch your child struggle; it is amazing.
I write this not because I am searching for something (but honestly I could use encouragement) but I write this more for the moms who are starting out, wisdom to say to someone who wants to do something for you, but is unsure what to do. And if you were like me in the beginning, you have no idea what to say, you are too overwhelmed. Ask for encouragement, ask if they would continually give you notes to keep cheering you on through this life long journey.
I write this for the person who has allowed a special needs child get in the way of your friendship. You're right, it is not about you and your friend anymore, it is about a child and what is best for the child; but by walking away you are missing out. You are allowing your selfishness to rob you of one of the best blessings. You don't need to understand, but you can encourage, you can support and you can make the difference that your friend needs.
I think we all can use encouragement. But remember Special Needs Parents (especially us moms) fight a lot of unseen battles. Some days are super long and sometimes almost unbearable. Cheer them on and encourage them.