I've been anxiously looking forward to the appointment at the Child Development Center because with everything that has gone on with Madison, it feels like we have a whole lot of things that are going on, but there isn't really anything cohesive to bundle it all together. (besides her genetic abnormality... but we don't know besides her having one kidney what is attributed to that versus what could have happened regardless). Here's a picture I took when I was filling all the forms out for this appointment that shows everything medically she's been through or been diagnosed with. (Side note: they gave me 2 lines for all this information, and I had to use a whole sheet of paper).
I've been struggling with wanting to have some kind of diagnosis that can help us get her the services she needs, but on the flip side not wanting there to be anything they can say because I don't want her to have that label.
At her appointment yesterday, after going through Madison's medical history, my concerns, and observing Madison, the doctor we saw diagnosed her with cerebral palsy & ataxia (which is basically uncoordinated fine & gross motor movements). She also thinks she could have apraxia (but wants a speech pathologist to officially diagnose that), and she thinks Madison could have a mild case of Autism. Her speech therapist said that we will keep a watch on the apraxia, but that she wouldn't diagnose a child until they were 3 or 4 at the earliest. Regardless, we do know that she still needs a lot of help with her speech & communication.
When she said autism yesterday, my heart sank & I did get upset. I wouldn't say that I'm a negative person, but I do tend to look at things with the worst-case scenario in mind. I want to be prepared for what could happen & hope for the best so I'm not disappointed or shocked when something bad does happen. I have known that autism was a possibility, but everyone we have talked to doesn't see that with Madison, so I wasn't prepared at all for her to say that & it threw me for a loop. With that being said, she has not been diagnosed with autism. We have an appointment on June 9th with the psychologists at the Child Development Center to do further testing & observation to see what they think.
Last week, we thought that we had a good plan going forward & that Madison would be able to just continue with private speech therapy once she turned 3 and that we could possibly get OT & PT through the school system if she qualified. We had a good plan as far as how we would pay for the private speech therapy because right now our insurance does not cover it. With the appointment yesterday, it looks like Madison will need to continue with speech, OT, and PT. Jake & I will do whatever it takes to get her the help she needs, but the realization of that & the stress of how are we going to pay for this hit me right after I realized what all the doctor said at the appointment. Yesterday afternoon I just had a break down. I think I sat in the recliner & cried, prayed, talked on the phone for about 3 hours.
I was stressed, worried, concerned, scared... how are we going to do this? What are the next steps? Where do we go from here? I had to finally come to terms with the fact that I do have a special needs child & she is likely going to be in special education for the foreseeable future. How do I protect her? I know how mean kids (and even adults) can be. Thoughts are going through my mind & not only was I scared & sad... I was mad. As I was praying all I kept asking God is when is this going to get easier? Why does Madison have to go through these things? Why do we keep getting the floor ripped out from under us when we start to think things are looking up? But you know what, God wants us to come to Him with all our burdens. It's ok to ask "why?" It's ok to feel pain, hurt & not understand what the bigger picture is. Because we can't see the bigger picture - but God does. He has had a plan from the beginning for Madison, before I even knew that she would be my child.
"Before I formed you in the womb I knew you, and before you were born I consecrated you..." Jeremiah 1:5
"For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope." Jeremiah 29:11
Worry is a sin. It is the result of not trusting that God will do what He says & not having the faith that He will take care of you. This is one of my struggles. It is so hard for me to give up control & to not try to fix everything myself. Does it mean that we can't ask God why things are happening & pour out our hearts to Him? Absolutely not. My relationship with God is just that - a relationship. For any relationship to grow, you have to communicate. Communication & relationships aren't always rainbows & sunshine. There are hard times & struggles, and God wants us to come to Him with all of our cares, hurts, sorrows, struggles as well.
"...cast all your care upon him, for He cares for you." 1 Peter 5:7
"Come to me, all who labor and are heavy laden, and I will give you rest. Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls. For my yoke is easy, and my burden is light." Matthew 11: 28-30
"Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving, let your requests be made to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus." Phillipians 4: 6-7
A dear, sweet friend of mine sent me these words this morning...
"You are grieving loss. It's ok to do that and to allow yourself to grieve. You have this idea of how things will turn out for your kids, and when someone throws you a curve ball with a bunch of diagnoses you feel like that person or results that you dreamed about died. You have to redream the dream. Your baby girl is a delight and she will be forever loved by her peers and their families. Don't stress over the Special Ed stuff. You may choose to homeschool or put her in private school. The possibilities are endless. The beauty is, you don't have to know any of that today. Today you get up and you thank God that she can walk, love, cuddle, and accept your affection. You don't get wrapped up in the labels and you ask God how to use her & your story to bring Him glory. He will make Madison's paths straight & yours too. She will grow into a young lady that loves Him & that is all that matters. If she never plays soccer or volleyball... who cares. If she keeps a sweet innocence about her that shouts I am filled with the Holy Spirit... now that my friend is value. You do not know how God will use this, but with your gifts and obedience to the Lord it will be big. It will be exciting to see it all unfold."
WOW... what an amazing word from my sweet friend. God used her this morning to tell me exactly what I needed to hear.
