Taking applications for umbrella holders.

Today MJ's service coordinator pushed me again (3rd time) to consider being a mentor to parents of children with special needs through CDSA and the Exceptional Child program. Im kinda like.....are you sure?

For many reasons, Im not sure. I think if she knew me a little more, SHE might not be so sure. Nevertheless, I have been contemplating what I would even say to other moms. Im kinda-sorta in a few special needs moms groups solely online, but I don't participate or relish in those communities.  In fact the weight of many of the other moms burdens scare and overwhelm me and it makes me take my eyes off the ball that is faithfully living our life. I don't think Im strong enough or smart enough to enter into another families pain and fear and try to lead them anywhere. I could tell them about Jesus, but I don't think she was asking me to evangelize other moms.  Here are my preliminary thoughts on all of this.

Dear mom who has been graced with the label of "SPECIAL NEEDS" for their child,

Hey girl hey.

Are you tired? I bet your tired.
Tired of people asking inappropriate probing questions about your Childs medical status, or telling you what a "gift" or "blessing" your child is with all this extra added emotion and big tear filled eyes that somehow don't really seem to convey what they are saying with their mouth, or patronizingly over-congratulating you on what a great job you are doing when they don't know your life (but Im sure you really ARE doing a great job, by the way). I bet you are tired having to explain and re-explain and then explain again medical realities to people who assume dumb crap they read or hear is real life. Whew. Navigating other people's expectations and emotions regarding your families current situation can take a lot of energy, if you let it.

If you are married, I bet you are tired of trying to navigate all the regular complexities and difficulties of two humans trying to love each other every day even without added learning about obscure medical differences, extra time constraints of a child who needs more from you that one might expect, and all the running to doctors, therapists, specialists, the hospital, etc. I hope that it won't be disheartening to hear that divorce rates amongst couples who have a child with "special needs' of any kind is almost double that of couples who have a traditionally labeled "Typical" child. I hope that knowledge will relieve you of the stress you might be feeling, the heavy guilt that somehow you are failing at this vital loving relationship because of something personal. I hope that knowledge will arm you with confidence to persevere and seek help from a counselor, your friends, your church, your family, anyone. I hope you will realize you aren't alone. And If you are a single mom navigating life with a child with medical complexities, Im impressed with you and your fortitude. I think you could probably teach all of us married moms a lot.

I want you to know that you didn't lose what you think you lost. You didn't lose a perfect life, and all the "normal" things that you thought were going to happen with your child just because they have a medical diagnosis that is not "typical." You actually never had that shot at a perfect life, and normal doesn't exist. If your child was totally "healthy," you still weren't safe. You weren't safe from an accident that could take their life suddenly. You weren't safe from a mental health crisis like depression, anxiety, bi-polar disorder, oppositional defiant disorder, etc.  You weren't safe from addiction of a million varieties. You weren't safe from all the other awful, sad, traumatic things that Im not going to put here. If your child was neuro or physically or psychologically typical, it didn't automatically mean that they were gonna be fine and sail through life successful and happy and unencumbered by any significant travail.  I say this to you because I had to realize it for me. Actually, God had to sit me down and point that out. Life is good now, and I don't say that lightly. It makes me sick to my stomach to know that perhaps somewhere a mom who is overcome with grief,fear, anger and/or resentment due to the obstacles her child has to overcome as other children seemingly cruise through life unhindered might potentially read that sentence "life is good now" and think I haven't walked through the damn fire myself.

I want to encourage you not to seclude yourself strictly inside of a "special needs community." Really. Homogeneity and over-exposure of of any kind is detrimental and reality-altering. If you can find empowerment and solidarity with mom's that have a child with extra needs or even moms that share your child's diagnosis, then do that. One of my closest friends has a child with Type 1 diabetes. It is not WHY we are friends, but it is a grace that we have each other to talk to about the endlessness of insurance complications, free time being eaten up by medical visits or the frustration at having to explain to yet another person what is/isn't your child's specific condition or needs.
However, you need your friends who don't have that life also. You may have to encourage them that you don't want a pity party with black balloons, you just want to share life's joys and sorrows together. You have to create that safe space for them to unload about their child waking up at 6am instead of 7:30am even when your child literally woke up 14 times the previous night and all the other nights since his beloved birth. You love your friends, and you care about their trials of all kinds. Comparison is the thief of joy, and since you are a woman = you already know this. Don't compare your looks, abilities, spouse, and now definitely don't compare your children's development and strengths/weaknesses. You never know what someone else is walking through or will have to walk through in the future, so keep your eyes and your heart on your own road.

Developmental milestones. What a minefield.  I had a book about them too, and an app on my phone. Well, when I learned that my son was no longer the prized and coveted "Mr. Typical" according to whoever, I wanted to set that book on fire in a blaze of angry glory. I settled for throwing it in the trash (Perhaps I then took that garbage bag and spiked it into the dumpster and spit on it,but whatever you get the point) I also deleted the app with a wild flourish and took my name off of all the list serves that sent me those kinds of emails. Some of those milestones are important as indicators of larger problems, sure they are, and your doctor will let you know but most of those (like, your baby is now ____ weeks/months and he should be picking up a red ball and not licking the windows anymore this week) are word fluff and will take up too much of your precious time. Chuck it, and your cares in this area out the window. Or you could be like me and know that by 20 months if your baby isn't walking its like the total END OF THE WORLD BECAUSE THE BOOKS SAY SO and you can worry endless nights and days.  Then, your brilliant baby booski  takes his wobbly first step on the night of that very last day of the 19 month of life (which you know because you were counting) and you are like "wow, I sure wasted a lot of time on that.

I can't speak enough of the benefit of love and nurturing of a child. Of accepting them fully as they are and celebrating all they do. I will write a more personal blog on this sometime soon, but personal caring attention has been proven to accelerate learning and healing and expand children's brain function. FACT.

I want to tell you to take your child's diagnosis and sit with it. Learn about it, get as many 2nd opinions as you want from qualified professionals, explain it to who ever you NEED to (close family, best friends) and then get on with your life. Do not live UNDER this diagnosis. You may live BY this diagnosis at times, and WITH this diagnosis for a long time but you are not UNDER this diagnosis. I mean that to say Do not give up. You say you won't or you haven't, but sometimes we do and have. Have joyful and promising expectations for your child, even if your hopes are repeatedly dashed. Expect great things, and know you are strong enough and there is grace enough if they don't quite make it. Google the Einstein syndrome and read about early lives of Walt Disney, Thomas Edison, and Albert Einstein.  I fully believe that all people rise or fall to your expectations of them, and we communicate our expectations of someone with more than just our words. Im not sure if this will be an encouragement to you, but doctors are wrong ALL THE TIME. They aren't God, as much as we wish they sometimes has His infallible and endless wisdom. They speak (and mis-speak) confidently and there is room and grace for that too, I Promise. Jesus is a healer, and sometimes that healing means us and our mindsets of what should be/could be.

In all your expectations, be right there with your child. Be in this moment, and in this struggle. No one wants to feel alone, esp not your child who has a medical burden.  Say "Im right here with you" maybe even before they understand what those words mean. They will feel your intent and its good practice for you. Find ways to support them and build solidarity. This is your road together, and as rocky and impossible as the terrain may be right now I promise its not all uphill. There will be plenty of brilliant flowers and bright sunshine days. Find people to walk with you through the dark storms who can hold the umbrella when your arms get tired. You will be ok.

I can't tell you where your grace in this situation is. Maybe you have found your peace. You might lose it again, but keep going where the truth is. It would be harmful and ignorant for me to say things trying to explain God in the midst of this specific situation for you beyond the tight parameters of scripture like You are not Alone and You are Loved, but trust me that won't stop other people you probably don't know that well from saying things like "everything happens for a reason," "Just Let Go and Trust God," "God never gives you more than you can handle" or even trying to illustrate their removed interpretation of the silver lining in the situation. That's for you and God to work out. I can tell you confidently = there is Grace. Even in the darkest of heartbreaks and devastation, the light shines. The darkness will not overcome, and you will not be left helpless.


*** I choose to put "special needs" in quotes for several reasons. I struggle with the idea of this community really being cohesive or communal in any way. As the east is from the west is the variety and breadth of  conditions and inclusions underneath that label. Have you been in a special needs classroom? In some locations in our country, educational advances are being made and with additional resources classes are more specialized to break down different types of special needs but I don't always find that to be helpful or the case. Also, my son has some neurological differences and medical needs that classifies him as "special needs." Fair. However, I know children are most likely neuro-typical, but are mean, rude, disrespectful, defiant and almost completely undisciplined. Yet, they aren't considered special needs? They very clearly have needs that exceed MJ's in several areas, yet aren't included in the same category, as of yet. See the inconsistencies? Gray areas. Labeling bothers me and I make choices against it when possible, as does the general haphazard tendency of humans to just lump things together that are different in any way from perceived social norms.

Comments

  1. SO encouraging Sarah. Thanks for these beautiful reminders of God's grace and faithfulness even when our littles face extra challenges. You are an EXCELLENT mama to a very wonderful little boy!

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