Tuesday, April 22, 2008

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.


Sigrun said...

I have been reading your blog for some time. I believe Luke will be healed also. We have a 'special needs' child. She has 22qdeletion syndrome and pretty much presents 'normal' to an outsider. We know we can accept her having a syndrome, but walking this journey with her can be frightening. It turns our world upside down and it is hard to pinpoint the turmoil to a glossy world.

I pray for you and your family.

Sigrun from Melbourne, Australia

annie said...

Sue... What a journey. The days, weeks, hours. All the ups and downs. Not for the faint of heart for sure. One thing I know is that Satan is a liar, and he uses the things that he knows get to us the most to "get to us." We have to always remember our God is bigger and has defeated Satan, giving us authority over him and his wickedness. Sounds like crazy talk from this born and raised church of Christ girl... but it's true. I believe that life and death are in the power of the tongue and I believe that Luke is healed by the wounds that were inflicted on our Savior's back so many years ago. Denial? I don't think so. Faith is the substance of things asked for, the evidence of things not yet seen. Not yet seen. Yet. We'll see them. I am praying for you.

Anonymous said...

I am really sorry you have been feeling depressed. One can't blame you though. I don't know how you do it some days, only that you have no choice. You can't walk away from this job, it is going to be your job for a very long time. But...God gave you Luke and he will lift you up and you can keep on keeping on.
I wish I could give you a big hug, but I am too far away! Just know I am huging you in my mind!
Sincerely, Cindy (California)

Anonymous said...

I actually haven't read the blog in quite awhile. Sometimes life gets too busy to do the things you'd like to.
When I read the blog today, I stopped and prayed for you! Many times when I read, you are an inspiration to me...as you were today. I know the Lord will continue to strengthen you through this whole thing. Someday, Luke will be healed! I pray you see it this side of heaven!
Say "hello" to your sister Cindy for me.
Blessings to you all,
Cheri Melton (Columbus, GA Foursquare)

Anonymous said...

Sue, we continue to pray for Luke and your family. We can't imagine the weight that you are carrying, but we know that you are not doing it alone. We appreciate your honesty and letting everyone know that it is not easy. May God give you renewed peace and strength for the journey that you are on.

The De Bord Family, Tacoma

Anonymous said...

A long time ago I shared with you about my grandson,Parker Kohl,who lived at Ft Lewis,WA. Parker went to be with the Lord April 17th. His mommy was giving him his meds telling him how thankful she was for such a happy baby and just like a flip of a switch,he was gone. He went from his warm,comfy bed to the arms of Jesus. Services will be April 28th here in Nebraska. Please keep my daughter,Karen in your prayers.

Anonymous said...

It's normal to have the feelings you are going through, just remember to give them to Jesus, because He is so much stronger. I am praying for you, and your family.

Lisa from Wisconsin and Momys

Anonymous said...

Sue and family,

I stop by now and then to receive a dose of inspiration. You are an amazing mother of an amazing family. I often wonder how you make it through each exhausting day.....but of course I know it is only possible with our Lord and Savior lifting you all up each day. Even then, I know, the days are overwhelming and beyond tiring. You are human. And although I don't know you beyond the words I read here, I know enough to know that Luke is so blessed, and your other children are so blessed, and Gordy is so blessed to have you as their mother and as his wife.

I guarantee that you are reaching and touching lives of people that you cannot even imagine. Through YOU, lives have been changed.

I have a daughter who suffers from a lot of endocrine system problems. She has many specialists at Children's Hospital in our area. She lives a pretty normal life and most people outside our close circle of family and friends do not even know she is ill. I know I feel overwhelmed at times and our situation is not even one bit close to your situation with Luke. I understand what you mean about being in denial. I have been in denial myself many times. I have denied my daughter the opportunity to meet and conference with many children with same condition..... because then, I think, I might really have to see the faces of other children who have become more ill. I have denied myself support groups. Why? Maybe then I will have to face the reality of her illness? I don't know.

I will continue to pray for you, Luke and your family. I will pray for peace and rest for all of you and restored health for Luke. I will pray for the Lord to keep his presence known and felt by you. I will pray for renewed strength and courage. Thank you for sharing your story so that others may learn and be inspired. I feel closer to our Lord every time I stop by here. Which, by the way..... I do not even know how I found your blog. It was not my doing..... I was led.

God Bless you all,

Kelly in Michigan

jodi pesicka said...

I am sorry about your week. I wish I could say that I have never had one of those weeks but I can't. So all I can say is that we are praying for you and your family and I hope things get better.

Anonymous said...

Thank you for being vulnerable for us. I have always thought you were superwoman, and I know that in the face of all your crisis, I would have fallen apart long ago. I appreciate that you also feel weak at times. I am raising 4 "normal" children, and I have days that I feel like I am not doing good enough for them. I will pray for you. We have been following your journey from the beginning and we will continue to pray for Luke.
Love, Selina

Susan said...

Sue, I love you, friend! Thank you for being so transparent and real. It's okay to have all those feelings, because God cares for every one of them.
You are such an excellent mom! Be encouraged by your friends, your family, and by our loving Father!
(and yes, I too had one of those weeks, only in a different arena in life that I thought I'd never be in, and quite frankly I don't like it one bit!)

dr_bristow said...

Dear Sue,
What a week! I am praying for you!

Anonymous said...

Sue, I've never responded to you, however today you really touched my heart as a daughter crying out to a father. He hears your cry and will refresh and give you joy through the struggle. As a grandmother and friend I love you, and I'm always encouraged by your faith. Love Margaret Ann Hardwick Pattie Graffe's Mom

Sheree said...

Hi Suzi:
I too check out How Luke's Doing every so often and send up a prayer to the Father for His strength and comfort for you and your family. Thanks for being transparent and sharing those "hard" feelings. May God bless you and may you continue to feel His everlasting presence!!
Love from a sister in Christ

Anonymous said...

I read how Luke and your family are doing all the time. Know that I am on this journey too with Ashleigh who had her ND 2 years ago. I have weeks like yours and I know what you felt when you said you wish you could quit but you know you can't. I guess the only thing is knowing how much harder our lives would be if our children had died on the day of their near drownings. At least we can hold them, smell their freshly washed hair and enjoy their smiles. You are an amazing mother with all those children and still having time to minister to others in Romania.

Liz Australia