Wednesday, September 9, 2015

Heartache/Joy/Medicine

Last night when he finally fell asleep after 1 AM.
 







Most people would look at the pictures above and see nothing but a huge mess. Most parents would look at the room and think to themselves that someone needs to clean up the mess. I couldn't agree more that the room is a mess and someone does need to clean it up which will more than likely be me. On the other hand, I see so much more in the pictures.

I see struggle. I see pain. I see tears. I see memories.

These pictures portray the remains of yet another long night. In the pictures I see the struggles of what Trenton has left behind with the inability to sleep. I see the pain that he goes through not being able to talk. I see the tears that he sheds daily with the frustration of not being able to communicate. Yet, I see the memories that consume my motherhood and his childhood experiences. Some families experience bed time stories every night....while some experience family time at the supper table discussing all the activities and festivities that are going on in their lives. However, there is a portion of people and families that experience a much different life. A life that is filled with struggles, pain, tears, exhaustion, meltdowns, tantrums, etc.

The pictures capture what I will remember most about being a mother. Even through the struggles and heartache, there is joy. There is reason to shine! Sometimes the good is few and far between, but it is there.

I hope that Trenton's sleep can get back on track. I do believe it is going to be a life long struggle for him. He will have periods where he will sleep but the sleepless periods are always right there waiting. Some kids with autism can communicate at times and then they go through periods where they can't communicate. It is simply a mystery. It is even a mystery to doctors.

I am very thankful that his medicine is working right now. He is not "wild" in the night which is a good thing. It is much more difficult to deal with being up all night when he is wild and uncontrollable.

Trenton's medicine worked wonders with him at the doctor yesterday. He had his 5 year old well check and he did the best he ever did for a doctor. I was so proud of him! His doctor even mentioned how she couldn't believe the difference in this visit and his last visit. His last visit to her, we couldn't even talk he was crying ,screaming, and throwing items. This visit was the complete opposite. Now don't get me wrong, it is not all because of the medicine. Autism simply has good times and bad times too. His sensory problems are at a minimal since upping his dosage so I do believe it is a combination of medicine and  low sensory problems which added up to a great doctor visit!
Plus, he had to get 3 shots yesterday and no one had to hold him down!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! His father was at the appointment with us which never happens and I didn't even need the extra help this time!  Amazing!!!!!!!!!!!!!

On the other hand, this morning was a struggle. He did great in speech therapy. After speech we drop off Andrew first. As Trenton and I were headed to Harsha to drop him off,  Trenton started crying. He continued to cry for an extended period of time. In the van right before we got  to Harsha, he started babbling like he was trying really hard to tell me something. I was holding in my heartache as good as I could. It never gets any easier seeing your child struggle and suffer and not knowing how to help him or what to do to help him.

As I turned to kiss him goodbye and to leave him in the hands of his coaches at Harsha, Trenton touched my arm and said, "No no" as he looked at the door crying. I am certain he did not want me to leave. Unfortunately, I had to leave. He gave me the best kiss on the lips and I walked out. I made it to my van and I collapsed in tears. It simply doesn't get any easier. If anything, it is getting harder as he gets older.

I have heard someone say, " I think he talks when he wants to." I often think back to that remark and get madder each time that I do. It is just a small example of how uneducated people. Again, just that one small sentence is more fuel for my desire to advocate and educate!

I drove off to Wal-mart and sat in their parking lot crying before I could get the courage to walk in 15 minutes later. Today, my heartache was just too much and I did something that I have not done in a very long time. I screamed "Why my Trenton?!?" at the top of my lungs.
After I collected myself,  I managed to walk into the store. I got my groceries crying and thinking of nothing but Trenton and how TERRIBLE it must be to want to express something but not being able to. TERRIBLE! If that doesn't give a parent the ambition to advocate and fight for their child then nothing will!!!!!!!!!!!!! I have no idea how some parents can raise children with autism and see what they go through daily and not advocate for their disability. Even doctors are puzzled by autism. So yes it is up to the parents to help the world understand our children!!!

Trenton's medicine is not only helping him remain calmer during the day but it is making him more aware of his disability. He has had a lot of frustrations lately due to his special needs. I just can't put in words what it feels like to see and watch your child struggle daily. Nothing worse in life...absolutely nothing than watching your child suffer!!!!!

I have had a pounding headache all day. I am sure it was from stress and tears. I know in my heart that Trenton wanted to say something to me this morning but he couldn't. The frustration gets to him and I don't blame him. His soul is trapped in a body that won't let him communicate. I simply can't imagine.

My headache got a little better when I arrived at Harsha to pick up the boys. I am always so eager to see their cute faces. I just love being greeted with a smile and hug from Andrew. I can almost always guarantee that. Some days I can see the excited, happy look on Trenton's face. Today, as his coaches walked him to me, they said that he got excited when they told him Mommy was there. That just made my day better! That is all I needed to know to make the heartache go away for the day. Plus, to put the icing on the cake...Trenton said, " I love you" spontaneously tonight!!  He was at the table and I sat his juice in front of him and as I turned my back to him to check on Andrew, I hear, " I love you." Now that just made my day do a 180!!


Isaiah 41:10
So do not fear,1 for I am with you;2 do not be dismayed, for I am your God. I will strengthen3 you and help4 you; I will uphold you5 with my righteous right hand.6

2 comments:

  1. Thank you, God, for your grace, even in times of such suffering. Did He allow Trenton to be able to spontaneously say, "I love you"?! yes, I do believe He did. I just have to believe that! It is that "hope" and the inheritable promise of something better; if not in this world, in the next, that keeps me getting out of bed in the morning! Love you, Trenton!!!

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  2. I love reading your words. I haven't taken the time to read much but as I do I picture myself in a similar situation and feel comfort hearing someone else explain it.( Not that I want anyone else to go through it you know what I mean. )

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