The Ultimate Sacrifice

I believe that the ultimate sacrifice (other than the sacrifice Jesus has made for us) is caring full time for a person who cannot care for themselves. The only people who will understand exactly what I mean are those who are doing it now or have done it before. I guess you might compare it to taking care of a newborn your entire life?

Imagine going to a job interview and the boss saying, "your hired, but I need you to work 24 hrs a day 7 days a week with no breaks for the rest of your life." Are you going to take that job? Absolutely not! But that is the job that some of us are given. It happens to be my job.

Nothing is about me anymore. It's all about Layne. I don't blame Layne for it either, he's so sweet and innocent. I have learned so much through this experience. The things you wanted for your life become unimportant. The newest cell phone doesn't matter, the newest clothes don't matter, what vehicle you drive doesn't matter, material things just don't matter. All those wants are replaced by hopes for your child. I have learned going to Wal-mart with no make-up and without your hair fixed is perfectly fine. I will never be "me" again. And I'm a better person now having learned this.

If you are a Mom or Dad who cares for another reading this, I would like to say I'm proud of you! And I know exactly what your going through. Unfortunately our friends and family will never understand what we are going through. We will get asked time and time again, "how do you do it?" and our answer will always be the same, because we love Layne and will do whatever it takes to give him the best life possible. In fact some onlookers may think it seems easy, because it's our normal routine and it's what we are used to. But I can assure you, it's not easy.

I do not know why God chose for Layne to be this way. I do not know if Layne will ever be fully healed on earth, but I know he will be in Heaven. I know that this is all for God's glory, and that by taking care of Layne we are serving the Lord. Many would choose not to care for him, but for us that would never be an option. I believe God has cried every tear with us, because he loves us and feels our pain too.

I have learned not take the smallest things for granted, like the very miracle that Layne is alive at all. Through this journey I have seen the worst. I have seen babies die the day they were born. I have seen parents planning their child's funeral instead of their first birthday. I have seen couples struggling through infertility, who would take a child like Layne any day. And having seen all this and much more, I am grateful to have Layne, I always have been but now I have seen what it could be like. I have realized that it is an absolute miracle for a baby to be born healthy, and it's sad to see so many healthy children taken for granted.

I do not know what Layne's future holds, I don't know how long he will be on this earth, but what I do know is that he is a miracle that I will never take for granted. Those of you reading this with healthy children(or unhealthy), young or old, make sure you tell them everyday how much you love them, because life is fragile and none of us are guaranteed tomorrow.

Birthday Party!

I wanted to share some pics from the party!!

HAPPY BIRTHDAY LAYNE!!

Happy 2nd Birthday Layne!!!! We love you soooo much!
And on a side note...Happy 4 yr Anniversary to your Mommy and Daddy!!!

Unexpected Journey

I have been reading a book called "Unexpected Journey, When Special Needs Change Our Course" By Joe and Cindi Ferrini. It's as if they took the words straight from my mouth!! I just want to encourage any of you who are going through these sames situations to read this book!

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.