I don't have any pictures from the birthday party. At 1:30 PM we called 911 because Henry had one of his "spells" again, and this time he looked really blue. I wont belabor my frustrating day in the adult ER and then our transfer to Children's in which we didn't even see the Doctor until 11:00PM that night. I struggle to find words to express the emotions I am facing: confusion, anger and worry, and a deep sadness. I was waiting all week to spend this day with my daughter Hannah who turned six and to celebrate Henry's day too. I sat in the ER alone for the first four hours until Matt arrived after work. I held my son and all I could utter to the Lord is "why?" Silence.
They sent us home this morning with the only suggestion being to stop feeding him by mouth until the repair in August. This answer is so unacceptable to me. To deprive my baby of food when he is reaching out and asking to eat? It seems so counter instinctual for a mother to not feed her child. Also, he had lost weight at his one year check and is falling off the growth curve. I feel discouraged. When asking the doctor what we should do when he turns blue again, he really had no answer other than, "I know these spells are frustrating." A huge understatement on his part.
We are to follow up with our pulmonologist on Monday and Henry is on a steroid burst again. He has a fever and is very lethargic. I told the Doctor that I know this isn't just a cold or something. Something is wrong. I know it is not normal for a baby with a type one cleft to not be able to tolerate eating. It is not normal for a baby to having blue spells. I just need to find a doctor who cares enough to help us--something so easy; feels so impossible.
Thank you for your continued prayers. Please pray for Henry's protection and for wisdom for me until we figure more out. I don't know if we need to seek help out of state? That is what we are discussing with the pediatrician.
Many of you have mentioned, "I don't know know why God is allowing this in your life." I don't know the answer to that and I wrestled with Him all night with the same question. I would not consider myself really charismatic, but this morning I just told the Lord: I need a word from you. . . something. Shortly after I found a chapter in the Old Testament concerning Israel and their journey in the wilderness. Oh, my, do I ever feel like I am in a wilderness. The Israelites constantly complained and bickered and had the tendency to remember ONLY the good things about Egypt, forgetting that when they lived there they had been SLAVES. They started thinking even slavery would be better than the wilderness, and years of NOT KNOWING what God was up to. I know that is our human nature, we want to know and we want to know now! God brought me comfort with this passage, and I will hold on to it for the time being:
"For the LORD your God has blessed you in all that you have done; He has KNOWN your wanderings through this great wilderness. These forty years the LORD your God has been with you; you have NOT LACKED A THING." Deuteronomy 2:7
Let me leave you with these truths:
It is true that God has blessed me beyond measure with my family and the love and support of my extended family and my husbands family. God KNOWS my wanderings, and there is comfort in that, in knowing that HE KNOWS what I'm going through. He is with me and because of that, because of Him, I don't lack a thing.
Please hear this as well, as my blog will be completly in vain if you read it and say to yourself "wow, that woman is really strong." Or "she must be a supermom." Let me just say, if I was a supermom, I think my house would be a lot cleaner and my oven wouldn't have started on fire this week when I attempted to bake a Birthday cake. I am hurting deeply right now. I feel that I am close to a breaking point as I have never been before. One thing and one thing alone sustains me, and it is the knowledge I have of God and the relationship I have with Him. Along with that, my relationship with Him is not some sort of holy perfection. I have struggled more over this past year with finding time to pray and to read the Bible. I have struggled to believe and trust the words in scripture. I don't pray ten times a day or have an hour long Bible study every day. God is the one who has been faithful to me, not the other way around. I have been angry with Him and I have let Him know how unfair I think life is.
Like the Isrealites in the wilderness, I have wondered why He is keeping me in this wilderness and where He is taking me.
There is something I know because unlike the Isrealites at the time, I have read the full story. At the end of the fourty years there is a promise land, like nothing they could have imagined. I know that at the end of this life, something better awaits me, and my son. Not because of something I have done, but because of what Jesus did for me. I'm at my weakest point right now, but God remains the author and perfector of my faith. God has a plan that I can't completely understand because I am only human. Someday when I see Him face to face, He will wipe away all the tears from my eyes, this life will seem like a distant memory and eternity with Him be when real life begins. I expect the next few months to be hard, I'm gearing up for this walk through the wilderness. I don't know where I am going, I feel blind, I feel helpless. I trust the ONE whose leading me and that is why I grieve deeply, but I do not despair. We live in a country that is full of so many treasures that even the poorest people are weathy. We are surrounded by so many distractions that make this life on earth seem like it's all that there is and so when things get hard, it's hard for us to see beyond our present circumstances. This isn't it. This is just the wilderness, the promise land awaits. If you've been thinking that this life is all there is, I hope you'll reconsider.
"For God so loved the world that He gave his only begotten Son. That who so ever believes in Him shall not perish, but have ever lasting life." John 3:16