Collecting my thoughts....

I’ve known now for the past month or so that I really needed to sit down and collect my thoughts and just journal all that has been going on. Night after night, as Chris was working on his homework and Matthew was asleep with all of his pillow pets surrounding him, I’ve sat just staring at a blank screen maybe typing a word or two, and then just stopping. I still don’t know why I haven’t felt the urge to write because there are certainly so many things that have been happening that I want to remember and acknowledge…but today, I have just felt like I finally have the energy and passion to sit and write again.

As parents, or in that respect, anyone in life who cares for other people whether it be family or friends….we all take things very personally when it comes to the care of someone you love. You want to fight for those people so hard, and you won’t stop until you achieve what you need to. God has certainly moved many mountains in my lifetime, and once again, I think God is offering me strength again to keep on going, and this time it’s specifically in regards to my precious child, Matthew.

Most all that have followed my blog through the past 17 months since Matthew came into our lives, you know the highs and lows we have traveled and all of the medical uncertainties that we have encountered along the way. Last year in October, Matthew had surgery for a cochlear implant. He was activated in November and we got NO results, that's right - NOTHING on activation day and for months later even with new mappings. Since then, we have heard the whole spectrum of responses including he may never hear or speak, this certainly may be progressive, we don’t normally see kids respond this low…..yep, we’ve heard it all. BUT, we have kept on fighting. We got him into the Early Intervention program just weeks after he came home with us, he had his testing done a month before he turned 3 so he could be a part of the Deaf and Hard of Hearing preschool 4 mornings a week. We’ve had a deaf and hard of hearing itinerant come to our home for months, and now we take him to private speech sessions twice a week as well as his hearing impaired preschool 4 ½ days a week. We have traveled the road of neurological and neuro-sensory issues, have SURVIVED months and months of watching our child flail and be up for hours at nighttime because his body wouldn’t stop moving. We’ve gotten him occupational therapy once a week in a private setting as well as fought for OT at his preschool once a week. We have spent our evenings working on speech and listening activities when we would have much rather been playing trains or riding bikes. We’ve done all that we have been asked to do, and then some. But, it’s never enough to just do what you need to do.

You’d think as a parent of a child with ANY type of learning issue, the education system should be there to help and support you. I learned from my Mom years ago about how hard you have to fight as parents for a child with additional needs to help them get through the educational system. I don’t like the term “special needs” at all, as I truly believe that all children are special AND that even children that carry labels as “normal” all learn differently. One of the people I like to call my friend through the blogging world did a great post a while back on labeling, and it really spoke to my heart. I was in a tough place over the past few weeks as I feel like all I have done is fight labels and the “norm” to try to just get Matthew the care that he needs and deserves.

Since Matthew gets his care in multiple areas, what we have found is that every single person has a different idea about what is going on with Matthew and that is SO frustrating as a parent. We know now that Matthew has certainly learned how to DETECT sounds which is so exciting, but there are problems with his motor planning making it very difficult for him to learn speech. If you could sit in on his therapies and see just how hard he works trying to make sounds come out, watching his lips and mouth shaped just like yours, but then seeing the disappointment on his face when he can’t get sounds out like you can, it breaks your heart. It breaks my heart as a Mommy, and we have started using some little rewards during speech and we make big deals out of any sounds that come from his little voice. We know it’s in there, he just can’t get it out even though he tries so hard. And, honestly I think consistently among providers is crucial, and it’s something I am working SO very hard on right now. A team and CONSISTENT approach is what Matthew needs. I can’t imagine how hard it is for him to go to preschool in the morning where things are one way and then have his therapies be different, and his daycare time even more different.

I have been thoroughly blessed with Matthew’s daycare providers, they have been more than willing to care for Matthew even in the midst of all of the scary things he went through last year. They have made attempts to educate themselves in sign language and even hired a new teacher for the preschool classroom who is fluent in sign. I am very much looking forward to that, and hopefully for this whole team to get on track.

The Mama Bear in me right now is in full charge ahead mode…I didn’t think I’d ever feel like this, but there is nothing I am more passionate about right now than helping my son and getting him the help he needs to be successful in life. Whether that success comes in the form of hearing and speech, or if it comes in the beauty of sign language, it doesn’t matter! Labels do not exist when you talk to me about Matthew. Matthew is my son, the little boy that God made me the Mommy of, and he is our precious miracle. We could not imagine our lives without him in it, as we have spoken of many times before. Life’s lessons are learned every day, and it has been a strong faith that has gotten us through all of the events that have happened. We are richer and stronger because of them, and we will continue to forge ahead where we are supposed to go.

I also had to do one of the hardest things in the world at the end of September, I had to leave Matthew for the very first time since I became his Mommy to attend a pediatric oncology nursing meeting in Minneapolis. It was horrible leaving him, and the worst part was I couldn’t communicate to him that I was coming back. Chris and my Mom and brother were wonderful with him and smothered him with love and all that he needed, but I really struggled with being away for 4 days. And, I’m glad they didn’t tell me until I got home that he got up every morning and searched the house for me….Of course, I learned so much at the conference that will enable me to be a better nurse for the children with cancer and their families I care for which is so important, but I missed my baby! It felt like the longest 15 minute ride from the airport home that Sunday afternoon, but what a wonderful surprise to have Matthew squeal with delight when he saw me. He then showed me he was angry at me, but I think he realizes now that I won’t ever leave him, at least I hope so!

I am also so very proud of Matthew as a person, is that possible to say that when your child is 3? I think so….in our neighborhood on trick or treat night, everyone sits outside and hands out snacks to the kids, it’s a lot of fun. Matthew could care less about going and getting treats, he stood and handed out snacks to the people that came around. At one point, there as a large amount of kids and adults swarming us at once, and all of a sudden, I saw Matthew run towards the street with a bag of chips. A woman in an electric wheelchair, whom was walking alongside her grandchildren was sitting back in the street. Matthew ran up to her and offered her a bag of chips, she chuckled and tried to refuse them, note I say TRIED. Matthew insisted she take them, then shook his little head up and down to say yes, I get you, please take this, and it’s OK, you are welcome. He’s SO observant and so very caring to all that surround him. He loves life and the people he encounters in life. We are so very lucky, so very lucky. God has big plans for him in life, I know it!

I will do another whole post on my sister’s wedding because that was another whole flood of emotions, but I will tell you that Matthew, who adores his Aunt Megs, had never been at a wedding before and he stole the hearts of everyone around him. He was very jealous though of his now Uncle Richie, and he certainly let Aunt Megs know that as he ran to her and wrapped his little arms around her. My favorite was though when he saw her in her gown for the first time, it was like he saw the most beautiful thing in the world. He knows how to love, people. He knows more about love that I think we all do. I learn from him every single day and I vow to be the best Mommy in the world that I can be to him. I will fight for him and work hard to help him for the rest of my life. I love this little boy so very much. He’s all mine, and I’m so proud of him. (This little guy in this picture makes every day so much fun!)

(Oh, and for those of you that wonder, our I800A has been sent to USCIS, just awaiting the processing 4-6 weeks, then we can be DTC again :)