Noah has really been struggling lately. It hurts this momma's heart to see him like this.
Noah was born on June 22, 2002. He was our little surprise and we were so excited to be starting a family. I was being medicated for a seizure disorder so we knew that the medication could cause problems (mainly spina bifida). So when he was born with no apparent issues, we were overjoyed! Noah spent 4 days in the NICU after being vacuum-extracted and having quite a bruise on his head. It caused issues with his oxygen saturation and all kinds of other smaller issues. We brought him home thinking his problems were over. He began crying, refusing to eat, and just generally unhappy at about a week old. Generally unhappy does not describe the screaming we heard over the next many months. He was very late reaching milestones and we were already having him tested at 8 months of age.
All to say, we have always known Noah was different. We love him that way. It's just who he is.
But our struggle to keep Noah safe is another issue all together. The kid is crazy. No, for real. He has absolutely no concept of danger. He jumped out of our second story night before last. He knew he was in trouble for leaving his bedroom but we could NOT get him to understand that the real problem was the danger. Yesterday, he somehow managed to get the garage door to come off the track and come down at break-neck speed. Thankfully, no one was under it. A few weeks ago, he started a fire in my parents trailer in the garbage can. These are just a few examples of what we have been dealing with.
We are not dealing with a little boy who is devious or defiant. We are dealing with a little boy who seems to lack the decision making skills to make good decisions. We talked to his behavioral pediatrician at length yesterday and we feel like we may finally be getting somewhere. He believes Noah has a neurologic impairment, possibly in his frontal lobe, where decision-making lies. It seems like the doctors are finally starting to understand that we need help.
Noah needs constant supervision, "don't let the kid out of your sight" constant supervision. The things he manages to do is usually when he is alone for just a minute or two. When in his bedroom, we have installed a lock so that we know he cannot get out (so he goes out the window instead).
So, the race is back on to find help. Noah needs some form of a "label" to get the help he needs from the schools and the doctors. We are waiting for results for a metabolic disorder that causes neruologic impairment, but it had to be sent to Mayo Clinic so the wait is one to two weeks.
Any form of a label will not change who our sweet little boy is. For all of his craziness, he is nothing but sweet. He endears himself to almost all he meets. He is full of joy and laughter, pure innocence. Our greatest desire for Noah is for him to love the Lord and to be happy. If these two things hold true, we will consider it success. Greatest success.
Home
Home from church camp. Looking forward to climbing into bed with my hubby. Saw lots of old friends. Renewed a few. Made lots of memories.
My feet are clean...finally.
My feet are clean...finally.
It's finally here!
So, I've been working with Josh on this for a loooong time. This blog has become more of my sounding board than anything he works with, so I didn't like the old domain name.
We have spent the last few months playing around with different looks and this is what we settled on. I'm excited for you to be able to see new pics of the family because I may actually be able to post them. The other site was NOT so user-friendly (at least to someone not too computer savvy).
Back to the usual stuff.
Prayer requests continue with Kate and you can keep checking it at the caringbridge site. This has been so heavy on my heart the last few weeks. People all over the country are praying for Kate and it has been a such a testament of God's faithfulness during suffering. Times are hard for the family right now and we need to be on our knees for them.
I remember the "before and after" mode that was mentioned in the latest update and it made me feel a little sick. I recall looking at the dates in magazines, newspapers, TV, etc. looking at every date before August 1st, 2005; that was the old me. Before.
Then came August 1st and everything after this was the After mode.
I don't quite live like this anymore. It shows me that life goes on. New memories are made and the old ones sweeten with time. I don't think about the horror of that day as much as just about my little girl, Ava, who was only with us for a few short months.
I remember feeling that those feelings of desperation were never going to pass. They did and now I kind of miss them at times. It always makes her seem closer.
After Josh got hurt, I remember thinking our life was never going to be the same. In many ways, it's not. But in most ways, it is. He's still the same guy. I'm still the same girl. We still like each other and drive each other crazy.
After being with Phoenix I was struck with one thing: that watching Josh suffer is not like watching your child suffer. Yes, it was heart-wrenching to watch Josh go through his accident, but there is something about the innocence of a child. Knowing that there is no way to explain to a five year old why they have to go through the suffering you are intentionally putting them through, knowing it's for their good.
Most children trust their parents. Seeing the look in Kate's eyes when she questions Holly was hard for ME to watch, I can't imagine the pain Holly was in. It made me realize that the heartbreak Holly is experiencing is so different when it's your child. I pray that God would sustain Holly and give Kate peace.
One last thing, Noah is back into the testing grind. Still looking for a diagnosis so that he can get the help he needs. He went to two specialists last week and they decided to retest him completely. Looking again at the autism spectrum. At this point, we really don't care what they "label" him, it doesn't change who our sweet little Noah is.
We are talking to the doctor again tomorrow about some specific concerns and the possibility of a metabolic disorder that caused his problems. Not sure who they will send us to next. I know, in comparison to what Holly is going through, this is just small potatoes. But my heart aches for my son. I want him to love life, be accepted by his peers, love the Lord. I have come to realize that so much of my desires for him do not really matter as long as he understands there is a God who died on the cross for him and he chooses to follow him. That's all that really matters.
We have spent the last few months playing around with different looks and this is what we settled on. I'm excited for you to be able to see new pics of the family because I may actually be able to post them. The other site was NOT so user-friendly (at least to someone not too computer savvy).
Back to the usual stuff.
Prayer requests continue with Kate and you can keep checking it at the caringbridge site. This has been so heavy on my heart the last few weeks. People all over the country are praying for Kate and it has been a such a testament of God's faithfulness during suffering. Times are hard for the family right now and we need to be on our knees for them.
I remember the "before and after" mode that was mentioned in the latest update and it made me feel a little sick. I recall looking at the dates in magazines, newspapers, TV, etc. looking at every date before August 1st, 2005; that was the old me. Before.
Then came August 1st and everything after this was the After mode.
I don't quite live like this anymore. It shows me that life goes on. New memories are made and the old ones sweeten with time. I don't think about the horror of that day as much as just about my little girl, Ava, who was only with us for a few short months.
I remember feeling that those feelings of desperation were never going to pass. They did and now I kind of miss them at times. It always makes her seem closer.
After Josh got hurt, I remember thinking our life was never going to be the same. In many ways, it's not. But in most ways, it is. He's still the same guy. I'm still the same girl. We still like each other and drive each other crazy.
After being with Phoenix I was struck with one thing: that watching Josh suffer is not like watching your child suffer. Yes, it was heart-wrenching to watch Josh go through his accident, but there is something about the innocence of a child. Knowing that there is no way to explain to a five year old why they have to go through the suffering you are intentionally putting them through, knowing it's for their good.
Most children trust their parents. Seeing the look in Kate's eyes when she questions Holly was hard for ME to watch, I can't imagine the pain Holly was in. It made me realize that the heartbreak Holly is experiencing is so different when it's your child. I pray that God would sustain Holly and give Kate peace.
One last thing, Noah is back into the testing grind. Still looking for a diagnosis so that he can get the help he needs. He went to two specialists last week and they decided to retest him completely. Looking again at the autism spectrum. At this point, we really don't care what they "label" him, it doesn't change who our sweet little Noah is.
We are talking to the doctor again tomorrow about some specific concerns and the possibility of a metabolic disorder that caused his problems. Not sure who they will send us to next. I know, in comparison to what Holly is going through, this is just small potatoes. But my heart aches for my son. I want him to love life, be accepted by his peers, love the Lord. I have come to realize that so much of my desires for him do not really matter as long as he understands there is a God who died on the cross for him and he chooses to follow him. That's all that really matters.
p.s.
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(Josh posting)
Shelly is at Camp in Hastings this week. She doesn't have Internet access so she probably doesn't realize about the comment section on the blog isn't working. I'm the one who did all the layout... so don't tell her. Maybe I can fix it before she gets back. He he he he.
If you want to leave a comment, do it at her facebook page...
Phoenix
I am in Phoenix, attempting to support Holly and family while their life seemingly falls apart. There are so many unknowns right now and all we can do is pray. We are crying out to God for mercy, to heal little Kate. The doctors have not been extremely encouraging and Holly has been in desperation mode many times over the last two days. Please pray for peace for the whole family. Pray that Kate is not scared. Pray that the doctors are wise in their decision making and that God's hand is used in the surgery.
Kate will be having brain surgery on Friday to take out the portion of the tumor that is reachable. The doctors have been clear that it is not completely operable. The risk to take out the entire tumor is too great. At this point, they are not sure of the type of cancer they are dealing with, only that it is aggressive and fast-growing.
Please be praying that the doctors are able to determine exactly what to take out during the surgery. The doctor did say that once in a while, they go in and the tumor "peals away nicely" from the vessels and is able to be dissected completely. This is our earnest prayer. We know God is able to heal Kate without the use of doctors, but we know He is also able to heal her using other means. We pray for a divine healing- for little Katie's life to be spared.
You can find her updates at www.caringbridge.org/visit/mcraekate Sorry, you may need to cut and paste cuz this momma is not too computer savvy! :-)
Love you, all my faithful prayer warriors. It's time to rally around another family this time. Please keep them close to your heart.
Kate will be having brain surgery on Friday to take out the portion of the tumor that is reachable. The doctors have been clear that it is not completely operable. The risk to take out the entire tumor is too great. At this point, they are not sure of the type of cancer they are dealing with, only that it is aggressive and fast-growing.
Please be praying that the doctors are able to determine exactly what to take out during the surgery. The doctor did say that once in a while, they go in and the tumor "peals away nicely" from the vessels and is able to be dissected completely. This is our earnest prayer. We know God is able to heal Kate without the use of doctors, but we know He is also able to heal her using other means. We pray for a divine healing- for little Katie's life to be spared.
You can find her updates at www.caringbridge.org/visit/mcraekate Sorry, you may need to cut and paste cuz this momma is not too computer savvy! :-)
Love you, all my faithful prayer warriors. It's time to rally around another family this time. Please keep them close to your heart.
