And what and unexpected journey, a journey far from over, this life really is. As Layne gets closer and closer to turning 2, it all becomes more clear of what he really will never do. I remember very early on, while he was in the NICU the doctor telling us he had PVL. We didn't really understand that so we asked him exactly what that meant, and his reply "he will probably have some trouble learning in school". So that's what we were prepared for, learning disabilities. Which at the time was a little disappointing, but doesn't even compare to what we are going through now.
When Layne was about 4 months old he started crying constantly(he still does cry alot). I had to literally walk around the house all day because he would not let me sit down. I still have to hold him all day, and even stand up alot. The doctor(who is not our current doctor) said it was colic and that surely by the time he was 6 months it would get better. Well 6 months rolled around and it wasn't any better. So he said by 9 months it would be better. Then at 7 1/2 months Layne started having seizures. So not only did the crying not stop, but now we were dealing with the most catastrophic seizures an infant can have-Infantile Spasms. That's when a whole list of new doctors and many hospital stays came.
To this day Layne has spent about 3 months(or more) in hospitals. He has had numerous medical procedures, including MRI's, CT scans, EEG's, many blood draws, 24hr urine collection, PEG tube placement, and probably more that I can't remember right now. Layne has probably been on at least 50 medications in his life time. He is currently taking 9.
Another thing everyone said would get better was sleep. HA-sleep yeah right!! Layne still doesn't sleep through the night, and sadly he probably never will. I hate to hear parents complaining how their 2 MONTH OLD, doesn't sleep through the night!!
Although this life is hard and heartbreaking, and this job of caring for someone else their entire life will never end, there are many things(many small miracles) I am thankful for.
1. Layne is here and alive. Imagine there was no technology, he would never have made it.
2. He can smile, I love his precious smiles.
3. He can hear, I cannot imagine him not being able to hear his mommy and daddy's voice.
4. He is seizure free, I never thought I would see this day.
5. He finally gained some weight this year!
6. He is learning to eat again!
7. He loves to hear music.
8. He recognizes his name.
9. He is learning many new sounds!
10. He is guaranteed a spot in Heaven, something not all parents can be sure of.
11. All he'll ever know is love.
12.I had to add this one thing, he loves it when we talk on the phone!
I will leave you with this cute picture of him playing in his chair(for a whole 10 minutes!!).
Dear Layne,
You are the most precious angel on earth. You have taught me more in your lifetime than I could have ever learned from someone else. I'm sure you have taught others some things too! I will never be tired of seeing your precious smiles or hearing the cute noises you are learning to make. You are a true joy despite your limitations, I am lucky I was chosen to be your mommy. I love you with all my heart, and that love is never ending.
1 comment:
Now THAT deserves an Amen sister!!!
That was beautiful. Kind of makes me want to stick my foot in my mouth for all of my complaining. You have the attitude I need. And look at how much more you are dealing with. Thank you for showing me how one can handle so much with such grace.
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