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I sit here on many nights full of emotions and feelings I am not quite sure how to express. I struggle with how to best help my son, how to understand him, how to raise him, and how to do it all the right way. Everyone says to be your child’s advocate, but what if you are doing all you possibly can, and it’s still not enough?
Sometimes I feel so overwhelmed. How can I get through another day with my son? Another day full of therapy? Another day of laundry and house cleaning and worrying about money? Sometimes it’s just too much.
I get so many emails asking me, “How do you do it?” People asking for advice for their children with special needs and I sit here asking God to show me what to do. How can I give advice when I am not even sure what to do for my own son? When three different therapists are telling me three different things, and when my whole family isn’t on the same page because I am the only one able to attend all the therapies and know what’s going on.
People tell me things like, “Pretty soon he’ll never stop talking.” But I don’t tell them about the words he loses after saying them, or the guessing games we play every day trying to figure out what his needs are. They say, “He won’t always be like this.” But I don’t tell them it’s hard now. I can’t live in the future of “he won’t always be like this” because in order to get him to that point I have to do the things we are doing now. The therapies, the doctor’s appointments, the feeling alone. They say, “He’s just acting like typical boy.” But I don’t tell them about the times we can’t calm my son down because he’s so worked up or that he doesn’t play like normal children. It’s not just the traits of a typical boy being a boy, it’s so much more.
And I sit here on so many nights thinking of all the moms out there who are struggling like me. Struggling with all that you have on your plate, struggling to know what your child needs and what is best for them. You’re not alone. Somehow we’ll make it through this. There is always hope.
And that is why I share this… My hope amid all the struggles we’ve been going through happened a few weeks ago when my son ate some foods that he has never eaten before. Textures and tastes that he would never touch or eat. It was such a huge victory for us, and brought so much hope for our hearts. A year and a half ago my son was only 3% for weight. He wasn’t gaining and he wasn’t eating barely enough to get by.
Several therapists and over a year later we have hit many small victories, but this one was the best. Moms, I know it’s hard when it seems like nothing is changing in therapy. I know how discouraging it seems when nothing is happening. I know what it is like to question if you are doing the right thing in your child’s therapist or if you should try someone or something else.
I ask that you hold out. Pray and hold out. Ask God to show you which therapists are the best, and wait patiently for the results. They will come.
What if your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You’re near
What if trials of this life are Your mercies in disguise
What if our blessings come through our STRUGGLES? What if these STRUGGLES are His Mercies in disguise?
This is a video taken by my son’s therapist at feeding therapy. This is just a little look into what feeding therapy is like and what ever meal time is like for us. In this video my son eats an entire piece of pumpkin bread (what we call muffin). If you know our story that is HUGE, the biggest improvement we’ve ever had! Thank you all for your continued prayers as we hope and pray Adam continues to eat new foods.