I'm so glad last week is over and hope never to have another one like it again!

Have you ever had a week, where you were glad it was over? I just got through one of those weeks. My hard week began on Friday night, April 11th. Luke was very sick that night, Gordy and I were up all night with alarms going off. It seemed that we couldn't get his oxygen levels right, then his food overflowed so we had to change him and his bedding. It is unnerving to be woke up to alarms all night long. Needless to say I only got about 2 hours of uninterrupted sleep that night. The next morning I woke up hoping that Luke would be better because I wanted to take him to a parade. As much as I wanted to take him, Gordy and I knew it would be better to keep him home.

I was so looking forward to our family going to the Daffodil Parade that day, I knew that Luke would love all the music, clowns, floats, etc… There are days that my heart breaks that we have a handicapped child, not only the disappointments of not being able to take him places, but also it breaks up our family. Daddy had to stay home with Luke, so I took the rest of the children. I cried a lot that day, something that I don't do often and just plan don't like doing, but I just couldn't help it. It ended up being a busy weekend because my sister Lori's daughter in law had a baby shower in Eastern Washington that my sister Jill, Lily and I went to on Sunday.

Monday, I finally bit the bullet and ordered a wheelchair for Luke, we've never bought him one because we used a regular stroller for a long time and then we've been borrowing one from the Children's Therapy Unit. He is now growing too big for that one and his Physical therapist has been encouraging me to apply for a grant that helps parents get wheelchairs for their children. I knew that we would not qualify because we never do, but she had me fill out the forms never the less. I went ahead and had him measured for a new chair we will see if we get the help, regardless of whether we do or not we are still going to be ordering it. It's unbelievable how much wheelchairs are, it begins at about $3,500 and then only goes up from there depending on the special needs your child has. That same day I was talking to a friend who also has a handicapped child and I began to realize that I have been living in denial for so many years. I began to beat myself up for thinking that Luke would be different than all the other children out there, that are just like him. Why didn't I apply for any of the programs that were available, I began to think of the money we probably could of saved if I had swallowed my pride. That only got me into a deeper depression. I know that we have followed close to what we've felt has been right for our family, whether that's been right I'll never know.

The week only got harder for me, I was dealing with a depression I just couldn't get through no matter how hard I tried. Wednesday I took Luke on a walk, when we got home he didn't look good to me so I hooked him up to his oximeter and sure enough his oxygen numbers where down in the 80's. We immediately hooked him up to oxygen and had it up to 2 liters before he was finally getting into the 90's again. I took his temp and it was 102, this sickness came on so suddenly, I felt terrible for taking him out while he wasn't feeling good, but I really didn't know he was sick.

Sometimes the stress of having such a fragile child is unbearable. I began to beat myself up, telling myself that nothing I've done for Luke has done any good, that I know nothing about nothing, that old lie of why or why did I buy a pool, I'm lying to myself to think that he is getting better, my other children are suffering because you neglect them, you get the picture. It took a few more days of utter despair before I was able to come out of it. The job of being a parent to a handicapped child is by far the hardest job I've ever had and this past week I wanted to quit, knowing this was not possible, made it unbearable. Have you ever been in a situation that felt hopeless? That's how I felt this week.

Sorry for going on so long about this, but I thought you would like to peek into my little head for a few minutes. I am doing a bit better now, leaning on Jesus is the only thing that gets me through this journey He's called me to go on. I know that I've said on numerous occasions that my favorite scripture is "I can do all things through Christ who strengthens me" I was having a hard time believing this last week, I'm getting a little stronger again. Would you please pray that God will continue to give Gordy, our family and myself the strength that we need to continue on this journey? It would be a great comfort to see all who are still out there following along with us, would you be so kind to comment on the blog today, it would do my heart wonders.

Love in Christ,
Luke's Mommy Suzi

PS Just wanted to let you know that Luke is doing very good, I promise to make my next posting all about him. Thank you for your patience and your prayers.