Sunday, August 8, 2010

"If we are serious about our discipleship, Jesus will eventually request each of us to do those very things which are most difficult for us to do."

-Neal A. Maxwell-

It has been some time since my last entry. So much has happened over the past month and a half that those of you who follow us by blog may feel behind because I have not taken the time to update. I feel it is important to take the time tonight, even if it means putting bed off for a while.

I spent some time tonight searching for that perfect quote to start this entry and the above seemed to resonate most with my heart.

We have been asked many times over the past few years "to do those very things which are most difficult for us to do." We have known a lot of hardship in our young family. Because of this, I have a greater love for those who have gone before, who have pioneered the way for us to have a better life and in my church for those early members of our faith who gave up homes, families, lost children and husbands in order to accept the gospel and pursue religious freedom. I feel in a way that I better know their depth of tragedy and sadness and I hope I also better know their intensity of faith in staying committed and true to the gospel of Jesus Christ. I also know their questions and some days lack of understanding regarding the Lord's call to suffering...I also know and feel these things in my heart.

Not one week after Jonah's seizure and EEG this past June, Jonah began to show symptoms of shunt failure. I was concerned and worried as Jonah up until now (two years time) has never had issues with his shunt. I waited over night and the morning of June 24th I rushed Jonah down to the children's hospital emergency room in Madera just to make sure that my suspicions were incorrect. I prayed the entire way but that maternal feeling we women possess really had hold of me and somehow I knew things were not right. Ironically we were almost discharged for home that night as the initial testing did not show much difference in the functionality of Jonah's shunt system. But, perhaps out of inspiration, the overseeing neurosurgeon decided to keep Jonah over night and by the next day Jonah's neurosurgeon who has followed him since the NICU reviewed all exams and discussed with me that most likely his shunt was indeed malfunctioning and he would need surgery.

I thought this would be a routine operation, hopefully a quick recovery and that we would be home within the week. Little did I know that Jonah would go through severe complications, three valve changes and even a redirection of the shunt tubing from his abdomen to his heart. By the end of three weeks time, our tiny man underwent four surgeries in addition to two OR room procedures. The most difficult problem was monitoring Jonah's pressure changes, he went through three valves before finally settling in with the valve that he now has. Along the way, after valve #2 they discovered the tubing was not draining properly in to his abdomen and decided to remove it and drain the tubing for 24 hours while Jonah was in the ICU for severe complications to the pressure build up. We honestly thought the worst during those four days of ICU because he was suffering from such severe bradychardias and his respiratory rate was so low. Thank goodness after removing the tubing, his symptoms mostly resolved so they made the decision to reroute the tubing to his heart. He now has a VA (ventriculo-atrial shunt) which drains in to the atrium of the heart. This is not the preferred place to have a shunt as a child, especially because as Jonah experiences his next growth spurt he will have to undergo yet another shunt revision to change out the tubing. With the VP shunt (which drains in to the abdomen) it is possible to leave extra tubing to unravel as Jonah grows but the VA for obvious reasons does not allow for this. It was a difficult decision, I knew about the VA and I knew that it's risks where more complicated and potentially could even be fatal because of the location but we were in a position that we had no choice.

After the VA placement, Jonah underwent one last valve replacement. By the time this surgery rolled around, I threatened transferring him to Cedars Sinai and the Madera neurosurgeon called and spoke with the CS neurosurgeon who then spoke with me and confirmed that unfortunately Jonah had to have the final valve change out. I was so exhausted by that day and if anything, had lost faith in the neurosurgery team and wondered why Jonah had undergone so many revisions in such a short period of time. I know neurosurgery and shunts are not a perfect science, there is no denying this but as a Mother I had to pursue other options when they began talking about a fourth major surgery. I am glad that I did, as the doctor at Cedars Sinai was wonderful and we now have switched to him and he plans to follow Jonah.

Jonah was officially discharged around July 17th. His eating was awful the last week in the hospital and we spent hours trying to work with him to get his skills back up to an acceptable point. We ran every GI test to check his fundoplication, make sure his swallowing was still safe, check his gastric emptying, which all came back normal and fine. The final conclusion was that the extreme trauma had caused psychological harm and Jonah had suffered set backs in his area of skills, including eating. It all makes sense, it does, but it did not change the fact that we were struggling to get Jonah to eat. Finally he seemed to be turning a corner and I convinced the team to let us go home and battle his residual problems in his own environment where he was most likely to recover quickly.

The past few weeks have been very up and down with his improvement. His eating is still not completely back to normal but we are getting him to eat his normal diet, it just fluctuates in the amount of time that it takes (sometimes taking as long as 30 minutes). I refuse to give up on Jonah because he does have the skills to eat and does not need the assistance yet of a G-tube, although I have had many doctors try and convince me that this would be so "convenient" for me, etc. I think the doctors do not think from a developmental perspective and most importantly they fail to remember that it is not all about "me" but really it is about Jonah and what is best for him. I am not able to take that independence from him, he has so little in way of independence. Why would I take from him this ability? No, we will keep up the fight and get him back on track even if it means sacrifice on our part.

It is so good to have him home, July was such a scary time for all of us. A time when we found ourselves thinking things that no parent should ever be faced with having to think or deal with. Through it all, I felt the spirit that Jonah is loved, Jonah is special and God loves my son perfectly and completely.

Jonah received several blessings while in the hospital, including one before surgery #2 where a local Bishop and his counselor came in to the hospital and administered to Jonah, the spirit was very strong and it was confirmed that Jonah is a very special child to Heavenly Father. For this I am grateful. I am grateful that my Father, who traveled down about the time Jonah went in to the ICU to help (so did Grandma and Grandpa Hanna who were a tremendous help at home with Noah) was able to council me in the hospital and remind me of the eternal perspective of things. One particular night, I was feeling so overwhelmed with Jonah's situation, with our home situation, the stress on Shane and I and Noah and most of worry about Jonah and his suffering when my Father reminded me that I had to keep the testimony of Jonah's incredible mission here on earth. He reminded me to remember all the experiences and times that I have been able to bear testimony to others about the love of God, the purpose of family, the meaning of charity, compassion and the true meaning of life. He reminded me of all the people I have met because of Jonah, other amazing women who are so inspiring themselves in all they shoulder with their own challenges and trials. He helped me remember that I have a whole other world that is part of my life now because of Jonah and I will be a better person because of it. It is so true, I can think of several instances in the past months were I have been able to bear testimony of God's love through my care of Jonah. I think back to his seizure at the local hospital in June, one particular ER nurse approached me (I will admit it was not with the amount of tact I would have preferred) and toward the end of our conversation she told me, "I look at people like you and it makes me believe that there are still good people in this world, people who really care." I was grateful for what she said and she opened up about being a single mother with children who were struggling and her own struggles and wondering if God loved her despite her mistakes, I was glad I was able to bear my testimony that I knew God did love her and always would.

Does this mean that every day is easy? No. There are hard days, very difficult days and there are lots of tears and many moments of wanting to understand what sometimes seem to be unjust and not right. But when I read the above quote tonight, I felt it best expressed what Christ asks us to do. If we are serious in our commitment to him, these times of challenge may come and they may mean incredible sacrifice, unimaginable sacrifice, but if we are faithful and true we will do all that he asks of us.

For those who wonder, "why do you choose to keep your son at home and not in an institution? why did you not let him pass in the NICU instead of intervening?" I say that because of our gospel perspective and our faith, Shane and I knew in our hearts that God had a purpose for these boys. We prayed so fervently during the NICU and we knew that no matter the outcome, God wanted Jonah to have the chance to be in a physical body and to be part of an earthly family. I try hard to keep this perspective, I try hard to express to others what it means to raise a child with special needs and love them for all that they are but I still have those periods when I wonder to myself if I have been forgotten. In my best moments, my moments of clarity, I know that although God is trying me there is a reason behind all that we are doing right now as a family. This time in my life involves such incredible trust, at times I don't think I possess the strength to trust yet another day but I have to keep the perspective that God has a greater plan in store, even if it does not reveal itself until the latter part of my life.

A very wonderful, inspiring Mother in my church ward whose special needs son is now 17 years old said to me the other day, "Michelle, I think to myself sometimes, how does she do it? How does she do this being a young mother when our son was our last and we had already raised most of our family? But then I remember Michelle that God is preparing you for something important, something that you may not know of for many, many years." She has been such a wonderful inspiration to me, a strong and loving woman who has overcome so many hardships herself and remains a complete inspiration and motivation to so many people with and without children who have disabilities.

I pray every day that I will live up to the great challenges that God has given me, that I will overcome and be the person he wants me to be. Yes, there are days when I think, "Really, God! Was I such a bad person to start with? Do I really need this much refining?" But I have to keep the greater perspective which is that if I stay true and worthy I will be able to be prepared to do all that God asks of me, what a blessing it will be when that day arrives.

We are still looking for work and praying the time comes soon. We know there will be sacrifices but we pray that Shane will be afforded the job that can take our family to an area where we can be closer to good health care. We hope this time is not far away. Shane continues to teach at University of Phoenix when they have classes for him, he works at Langers Juice managing their Bakersfield location. I may have to look in to a job myself, sadly, because this year has been so hard on us...the past couple really. So far I am still looking and hope the Lord will help us make the best decision in the matter.

Noah continues to grow and expand his vocabulary. I will say that July was hard on him, the first week of Jonah's hospitalization he was in several different homes and really struggled with brother and Mom being away so much. When we returned, he went through a good week or two of severe temper tantrums, more then his normal and I think it was his way of telling us he was stressed too about all that was happening with his brother.

There are also so many sweet things happening, like Jonah learning to give kisses and Noah now more spontaneously hugging and kissing his brother and the first time Noah told me, "wuv you!" I love to see this, I love to see Jonah and Noah growing up together and keep praying that they will have a special bond for each other. I love seeing them grow in the gospel, Noah loves the word "temple" and every morning Dad walks past our oil painting in the hallway of the Salt Lake temple and asks Noah, "What is that?" Noah tells him excitedly, "temple!" Shane then takes him to the picture of Jesus and asks, "Who is that?" He says, "Jee jee!" (He has a hard time with Jesus). He is learning to pray, fold his arms and now I am having him repeat his prayer with me...before I know it he will be saying his own prayers all by himself. These are such precious moments for me, I truly think my favorite time of the day is the end of the day when I can take both boys in to the rocker, read the children's set of scriptures to them, sing them a couple of Primary songs and say a family prayer. They are growing up so fast, I am trying to love all of these moments.

Jonah will be switching over to the school district this fall and we have been battling his IEP. Sadly, the schools here do not have good programs for the more severely disabled and we have our challenges ahead of us but we are taking all the right steps, studying the California laws and meeting with a local advocate. We are praying for the very best for our tiny man. Noah will be discharged from his early start speech program (yay!) and will start a normal preschool in October after his third birthday. He will continue speech through the local school district.

These are our current adventures. Thank you for catching up and thank you, all of you, for your continued prayers and heart felt words of love as you continue to follow our family happenings.