Thursday, May 22, 2014

Milestones and Summer



Well, today is Davids last official day of school. This year has been so surreal....especially the last five months. We have fought uphill battles and quite honestly, there were a couple of times I wasn't sure David would make it to this day. I questioned on numerous occasions if all the pain he went through, all the close calls, seizures, surgeries and hospital stays were worth it. Then on April 4th, when I saw him stand for the first time, legs beautifully straight.....I knew it was.
                                                                        May 2014

This school year has been filled with a lot of expectation, disappointment, fear, unrest and milestones. Even though I knew back in August as he wheeled himself down our driveway and to his school bus that there was likely both a surgery and change in his future, I had no idea how intense the year would be. I was adding it up the other day and since August 2013, there were: 4 round trip visits to St. Louis, 2 major surgeries, 32 seizures, 10 ER trips, 6 hospital stays for two or more days and 143 days without sleeping in our own rooms or our own beds. Last night ended that.

It was a milestone that seems rather mundane and hardly blog worthy to most,  but for our family.....it was huge. While David still hasn't mastered more than seven stairs under his own power, he has been miserable not being able to go upstairs. David is not a huge tantrum thrower however, his inability to make it upstairs has been the catalyst for more than one meltdown of late. The kid literally loves his room. Yesterday, as I got out of bed after my 143rd night of sleeping only because I was dead tired and not because I was comfortable....I decided it was time for the move. I knew David was not comfortable either and soon ESY (extended school year) would be starting and we would be needing that room as a classroom. It was simply time!

As Z carried David up the stairs last night, the look on that little guys face was priceless. He knew what this meant and he was beyond excited. His oooo's, ahhhhh's and laughter spoke volumes. Once ready for bed, he snuggled down in the familiarity of his blankets, pillows and bed and was asleep within five minutes. THAT my friends was a record. This morning he woke up happier than I had seen him in ages. As for the rest of us.....I think Z said it best when he said, "This feels normal. This is what I have been waiting for." Trust me, any person or situation in our house deemed "normal" by any of us is extremely high praise. It is a good feeling.

Now we move forward to summer. There will be ESY, swimming, physical therapy, doctors visits, get together's and likely a few surprises along the way. Hopefully ER visits and hospital stays won't be included in any of it.....but maybe, just maybe......walking will.

Yep, it has been quite a year. We have been to the depths of hell and as usual, David fought back and hit milestones along the way. What an amazing kid he is and how blessed we are as a family to have him, be able to watch him turn into such a wonderful young man and how excited we are to see him hit each and every milestone. These are especially amazing knowing that no one ever thought he would even make it out of the NICU 13 years ago.
                                                                           August 2013

We are blessed. We are grateful and most of all......we are READY FOR SUMMER! 

Happy Summer everyone!

Monday, May 5, 2014

Special Needs



Special Needs! It is a common term these days. The official definition according to Google is: particular educational requirements resulting from learning difficulties, physical disability, or emotional and behavioral difficulties. From all that I read, special needs is basically used as a noun describing children with different abilities. When I was a child, "special needs" was not even a term. Kids were called, slow, not right or retarded. They were not terms meant to be mean, they were just very literally, what people saw and put words to. The only special child I ever knew growing up was Sammy. Later on I knew kids that couldn't read well who were defined as slow, but knowing them as adults they later learned they were dyslexic and have become quite successful, but Sammy was the only one I knew who was even comparable to my David.

Over the years, many things have been said about David and myself. I have been called strong and even amazing (whats so amazing about a mom taking care of her kid?) and David has been called everything from a miracle to a burden. Harsh? Yes, but if you have a kid like David, you learn to roll with the punches and ignore both rudeness and ignorance. As the saying goes...."Haters gonna hate!" However, whether you view David as God's greatest miracle or both a physical and financial burden, if a special child is not part of your everyday world you simply don't have the facts either way. I have some amazing friends who love my entire family and would do absolutely anything for David.....except be in a room alone with him for more than five minutes. They love him and if he is with me, they talk to him and play with him, but the second they might have to be alone with him, they go into full on panic mode. This is not a negative reflection on them, it is simply a fact. If I am there, then anything happens and they are simply a background support for me. However, if they are alone with him and anything happens (seizure, the need for a diaper change or a need for communication) and they fall apart. This is why it is very difficult for me to find people to watch him. Thank God that there are a couple of people out there who know David well enough to have my back in an emergency, but for the most part.....there are very few that feel absolutely comfortable with David and who know and understand his needs. So to most of the world, I am sure that to some extent if people are dead honest, they do view David as more of a burden than a miracle simply because they fear him and his needs.

For those that wonder "how" I do it daily, I simply reply....."How could I not?" David is my child and I signed on to be his mother, just like all parents do. I didn't say I would be his parent as long as he was perfect 24/7. I signed on to be his mom through anything....the good, the bad and sometimes even the heartbreaking. I do it daily just like any mom takes care of their kid daily. The only difference is that I have to take care of David differently at times. It doesn't make me strong or amazing. It simply makes me a mom!

When David was born, having a special kid was not even on my radar. It is only natural for parents to hope and pray for a happy and healthy child. When the unthinkable happens though and the child comes early and he is so small and so helpless and you know that you might very well lose him, then all you do is hold on for dear life and pray that his life is spared. You pray for his healing and most of all you pray that regardless of what his health issues might be, that you have a chance to be his mother. I literally spent days sitting in a chair by Davids bed, rosary in hand and praying hours on end. I would doze off in my chair during a prayer, wake up and start again where I left off. It was the very definition of flooding heaven with prayers and I imagined angels and saints surrounding my little two pound son, joining me in prayer and giving his little body the strength to fight. I remember time and again thinking that I didn't care what health issues my son had, I knew we could get through them. I just wanted to be able to hold him, snuggle him, kiss him and take him home. At the time though, I couldn't do any of those things. All I could do was pray.

Once we got David home, Tim and I knew that together, whatever life threw at us from this point on, we could take it. David was beautiful, healthy (despite his chronic issues) and happy. God had answered our prayers and we were ready to take on the world. When Tim died suddenly a few months later, my world turned inside out. I had never signed on to do everything all by myself, but I did sign on to be a parent for better or worse. Losing my spouse did not mean I could just cut my losses and walk away......nor did I want to. My kids were all that I had left.

Being a single parent is never easy in the best of situations. There is so much that is shared co-parenting and when one is gone, you become both mother and father and everything falls upon you and only you. With a special needs child, it is slightly more difficult. With each knew diagnosis or change in condition such as seizures, you are alone and have to educate yourself, prepare yourself and make his world the best place it can be despite his issues. It is no different than if you have a child with cancer or any other sickness or disease, except in Davids case, he is chronic and therefore his disabilities will likely last a lifetime. However, we as parents take the mountains along with the mole hills in stride and muddle through.

Someone ask me the other day, since I had non-special needs kids and David, what the differences were. I found it an intriguing question as no one has ever asked me that before. The things that most on the outside looking in would view as difficult where David is concerned really aren't that bad. David is 13 and he is incontinent. This is not particularly one of the more fun aspects of life with David, but it is not horrible either. As a parent you can get used to diaper changes, but at 13 when he shows interest in actually using the toilet, the excitement for all involved is beyond words. Sometimes when we have average need kids and more than one, the milestones such as potty training are exciting but after the second or third child, they become more of a hurry up and move on rather than a celebration. With David though, not only is he hitting a milestone, but I know beyond a doubt that he also understands that milestone and when you are told early on he might never understand these kind of things, well.....it is just amazing! Also, as a mother with other kids, you learn early on not to dwell on the differences between special needs and average needs. Your kids are just your kids, each individuals in their own right and none viewed as greater than the others. In my house, only society has ever judged David differently, Z and I never have.

I honestly think that no families are more blessed than those with a special child. These kids come into this world fighting and their spirit is contagious. Families learn the importance of love, compassion, kindness and selflessness. In return they gain unconditional love, complete acceptance and a new understanding of what is actually important in this world and what isn't. In our house, selfishness and ego are checked at the door because once through that door.....David has our heart and there is nothing we wouldn't do for him.

Is having a special child easy? Absolutely not! When you have to deal with doctors, insurance, hospitals, ER's, schools, staff and judgmental people that come in the form of both family and friends....at times it is stressful. Then do all of this by yourself with no money....... and it is exhausting. The upside though, is that I wouldn't trade a second of these last 13 years, because life with the Incredible Mr. David has made me a better mother, a better person and it has made my family strong. It has given me a voice I never had and it has made me realize that God makes no mistakes. David is a gift and I thank God each and every day that He chose us. As I said....it isn't easy, but then again......the best things in life never are.