So many thoughts....

I've started and stopped and restarted this post SO many times... I've never quite found the right way to put my thoughts and feelings down, but tonight I'm just going to go for it. If I ramble or don't make complete sense, please forgive me. :)

If I said that being the parent of a child with special needs is easy, I would be lying. It's challenging. Parenting as a whole is a challenge! It's challenging whether your child has any special need, multiple special needs or no special needs. Children don't come with instruction manuals or a starter's guide or a page that says "Begin here...". There are no maps, no directions, and every child is unique in their needs - special or more typical. Yet admittedly, having a child with special needs is made more challenging - perhaps even hard - because you're thrown into a world that's filled with medical terminology, specialists and therapists who each have a specific role to play.

As the parent of this child, you have to try to keep track of each of these team members, their roles, and coordinate everyone's efforts. You have to become extremely good at budgeting, scheduling, time management, and medical care. You get a crash course in every specialty and therapy while becoming well versed in medical terminology and shorthand. I sometimes joke that I expect degrees in every specialty and therapy field by the time X turns 18. I'm only half joking though...kinda. It's amazing what you can learn (and retain!) when it's a necessity.

This sounds like it'd keep you plenty busy, right? Of course! But, there's more to it. You see, your child still needs to be a CHILD! They need to have childhood experiences. The difference is that now, you will have to figure out ways to adapt those experiences to your child's abilities. You still need to take time for yourself in all of this because having a healthy, happy parent leads to having a healthy, happy child. You need to take time for other relationships in your life - marriage, parents, siblings, friends, etc. It's a hectic, challenging life, but it's not all bad.

We see lots of posts on various sites about top ten lists for what it's like to be the parent of a child with special needs, or lists about what parents give up, or what struggles a child with special needs goes through... the list goes on and on. Many times, those posts hit home in some way or another. There's sometimes something in them that we/I read and think "Oh wow... they're describing us!" Yet, despite how some of the things in those posts hit home, I can't help but look at our lives...at X's life...and see so much GOOD!

It would be so incredibly easy to be angry or bitter. It would be easy to blame ourselves or ask why us or why him. It would be easy to see all of the negative aspects of the challenges that X has in his life. Yes, it would be easy...

The negative isn't what we see, however. We aren't grieving about what might/could/should/would have been. We don't ask why because...well, because it just doesn't matter. It won't change anything. We aren't angry or bitter about being parents to a child with special needs. We aren't angry or bitter that his life path is different than what we'd hoped and dreamed for him.

Instead, we're CELEBRATING every second we get with X. We're CELEBRATING every milestone and accomplishment. We see the beauty in his life. We see his beautiful smile, bright eyes, easy laugh, cheerful disposition, strength, determination, good nature, caring heart, gentleness, empathy, and enormous capacity to love others. We see the happy spirit that is our son. With so much good in his life, the challenges aren't so difficult.

We don't see ourselves as heroes or martyrs because we care for our child who happens to have special needs. We see ourselves as parents who are doing our best to provide for our son. We aren't missing out on life. In fact, we've been given a unique opportunity to witness what can only be described as miracles multiple times.

We don't see X as a victim of circumstance...or as a victim at all. The truth is he only knows life the way he lives it now. He doesn't miss not having various skills because he never had them at all. Whatever skills might be behind or missing don't stop him. He lives a fun, full, joyful life! Most importantly, X is not alone in his struggles which makes a tremendous difference. He is loved immensely by people all over the world who are his cheerleaders,..but most especially by his family!

What we DO see...is hope. Every day is full of hope. There's so much good...so much joy...so much love in our lives; in X's life. We will never forget the day that doctor's told us what they anticipated X's abilities and quality of life to be. We both instantly made the choice to not give up. We told the doctors, "We don't give up that easily." We don't. Neither does X. And neither should you.

No matter how hard a challenge seems to be...no matter how easy it would be to be bitter and angry...always, always have hope. The rest will work itself out.

So Many Changes!

It's been a L O N G time since I've written anything here. It wasn't intentional. Life with a child who has special needs is so unbelievably busy! There have been a lot of changes for X in the past 7 months. (YIKES! Seven months since my last entry?! I promise I'll try to do better!).

In September 2014, we headed back to the all-too-familiar hospital for X's next round of surgery. This time, he needed an inguinal hernia repaired. I've linked you to some information about what an this type of hernia is if you're interested in learning more. Anyway, this had needed to be done for a while, but X was being his usual trooper self and not really letting anything slow him down.

We were going to combine this surgery with his abdominal surgery done in April 2014. But, both we and his team felt like the additional time under anesthesia and the additional incision to recover from would be a lot. It turned out to be the best decision to wait. Recovery from that abdominal surgery was hard for X.

In addition to repairing the hernia, the time had also come to do a surgery to correct the eye crossing that X had. There are a couple of causes for a child's eyes to cross. I'll get into this in more detail in another post. The short version is that sometimes it's a physical problem and sometimes it's a neurological problem. In X's case, the problem was (Is? Technically, the issue still exists. His body can just compensate for it now.) neurological and a direct result of the significant bleeds he had as a newborn. The technical name for the eye crossing is strabismus.

He had surgery first thing in the morning. He was the first child into the operating room that day. I guess that's one benefit to needing two different surgeons to do surgery for your child. Surgery took a little over two hours. X never does great after anesthesia. It's due to some other issues I'll talk about at some point in the future. Bottom line: he needs oxygen and lots of  after anesthesia is introduced into his system.

I was also so grateful we were in the hospital that first day because pain control can also be an issue. Luckily, there are better options for pain control when in the hospital than what is available for use at home. Keeping X comfortable is directly related to is oxygen needs and his recovery time.

He's all recovered now. His eyes are so much better. He can see better! The hernia is no longer an issue. He's also been GROWING! He's grown 3 inches taller in the past 7 months. In just the past two months, he's gained a whopping seven pounds!!

X is now combat crawling quite quickly. He can sit up completely on his own now, but he does still need to use his hands to keep his balance. He's getting better and better. It's just about his body learning how to find that perfect center for balancing. He's started to take steps if we help hold him up. He can feed himself from a spoon...although food is still not something he really wants. He still drinks mainly bottles, but he's getting adequate nutrition, so we'll get rid of the bottles at some future point. I don't really care when that happens. X just recently got a gait trainer which is pretty much a super fancy walker. It helps hold him up so he can learn to take steps and be independently mobile.

X is also talking up a STORM! He talks about anything and everything. He remembers new information very easily and has learned a number of things that impress not only us, but his developmental team as well.

Finally, X is already 2 1/2 years old. He'll be 3 before we know it...or are ready for it! He has taken 2 by storm and loves all the changes being a toddler brings. :)

So there you have the somewhat condensed version of everything X has been up to for the past 7 months. I'll probably write another entry tomorrow. I'm planning to anyway! There's a lot still to talk about and many more thoughts I have going through my head that I plan to share.