


Great news today! Selah is out of the PICU and in a step down room. She is now on a medicated patch for her blood pressure and thankfully it seems to be helping. She is also getting some meds through her feeding tube for the BP. The idea with the patch is it will give her a steady dose of BP meds so she won't have the highs, she still is high but not too high. Today she stay around 118/60, too high but not like 180/110!!!
Tomorrow we are meeting to discuss the next steps. She was scheduled to have some oral surgery before all of this happened so we are hoping to get it done here. Her teeth/gums are in really bad shape. Strong's has a School of Dentistry and it would not be hard to arrange everything and get her through it. Then we will begin the final arrangements to get her home.
Today was mine and Shad's birthday. We went to Cracker Barrel and ate comfort (for me- fried chicken, fried okra and sweet tea!) food. Then we went and let Shad pick up some Lego sets...probably went a bit overboard but he was so happy! He got four sets of different "Lord of the Rings" Legos. Now he just needs the biggest set to have them all! He has already put together three of them, genius boy:) We first planned on going to the Rochester Zoo but it rained so then we were going to their Children Museum, BUT after getting the Lego sets, he just wanted to come back and put them together. He is a trip, he told me we could go tomorrow! Shad is a blessing to our family and we would not be complete without him. I often wonder do his birth parents think of him? Do they wonder what became of the little boy they left on a street? They missed out on so much but we are so blessed by his life!
So for my birthday I did a little shopping. I have a secret, I'm addicted to leggings/stirrup pants. I'm sorry I was a teen/young adult in the 80's and that was my clothes of choice! So for them to be back, in the stores make me HAPPY! So that was fun to go get them.
But what I wanted more than anything was for Selah to "come back to us"...Jon went and was with her this morning till lunchtime and I went back this afternoon till supper and now he is back over with her. It is nice to be in another room and have less worries about her physically but we miss her. Today when we went out to eat, we missed her, we miss her when we put the other kids in the van. Everything has a different meaning to us now. Today at Target I saw her little car that she loves to ride on a shelf & it was like a knife to my heart. Everything reminds us of her.
Five weeks ago tonight was another rainy night. Jon & I had been at the hospital all day, just like we were today with Sam and Sarah having their eye exams under anesthesia. And we had another birthday, it was Selah's birthday. We had a great dinner at the RMH but we didn't do alot in the way of celebrating it because of the weather and that we were all so tired from being up so early. We planned on doing it on Wednesday....we never got the chance. That just eats at me so bad. She didn't get to really celebrate her 8th bday. She didn't understand birthdays but I wanted to do something really fun just for her. It's something I will always regret, the accident happened early in the day on Wednesday and we had plans for later.
Tomorrow will be 5 weeks, it seems so unbelievable. It doesn't seem like five weeks at all to me. There has been so much going on and we've been busy. Tonight I'm in a somber mood. Will I ever get my daughter back this side of heaven? I don't have the answer for that. I certainly hope that God will heal her little mind. But it is hard to believe it will happen.
Growing up I had a rather crappy lot in life. I didn't really have much of a family, certainly not a "regular" family and that was all I wanted. Then when Jon & I married and finally had a child, that was all I wanted. Then we lost our twins in utero at 22 weeks. Eight years later we had Sam, Then we adopted Shad and now recently the girls. I LOVED having a larger family! There is nothing on this earth I wanted more than to have children. We were just so blessed and thankful for all five of them. It seems like, without getting all weird & "voodoo" christian, that I've been "attacked" in the area of family all my life. It is where I've had my greatest joy and deepest sorrow. Truly, it is something I don't understand at all. I've cherished my kids, been awed by the fact that God gave them to us, and just loved them with everything in me. I've traveled around the world for three of them and carried the other two through the worst pregnancies ever:) They've all come with a price! But it has been so very very worth it for each of them. I fight for my kids, I'm rude and mean ( if I have to be for them) and I'd probably kill without a second thought to protect them...but I can't fix this for Selah!
We are grown ups and can take responsibility. I have to say truthfully that I am scared of the new responsibility that lies before us. We're used to kids with special needs, but this is a whole new ball game. But we can do it, sure our lives will change more but it's not like we are folks who are out and about alot anyhow, we're not running off to Europe (except to adopt kids) or Vegas or wherever....
So we will live and adjust...but the last few days all I can think of is Selah and how unfair this is to her. She was living in an adult mental institution most of her life and had just three months with us to be loved on and cherished before this happened. We did many "firsts" with her...but not enough! We still love and cherish her but she seems to be unaware of her surroundings...unaware of us. Today I saw some kids at the mall and it just made me mad that she can't run and play now. After all she has been through to have to deal with this now... The doctors tell me she is in a "dream like" condition and honestly I hope so, I hope she is unaware of things. She just deserves so much more than this!
The thing that keeps me going is the truth I have written about time and again. This world is not our home, this is not the end, life is but a vapor....life is short, eternity is long.....that is what keeps me going. I want Selah to be healed but if she is not, I am so thankful she will be healed for all of eternity. She will live life fully then. Having that deep faith of an everlasting life, keeps me going. Selah will one day live life fuller than many other people will ever know. One day all tears will be wiped away. Those are the truths I've held close to my heart since Sam was born and really since we lost the twins. that truth is what I'm holding onto now also.
I may cry and weep often on this earth but there is coming a day when I am going to be the happiest person in heaven! I have more to look forward to than most! I will meet my twins, I will see Selah, Sarah, Sam and Shad healed....can you imagine? I can not wait for that day! It will be glorious!!!
But I pray that Selah will be healed on this earth, please continue to pray for her. Pray for her, not so much for our sake, but for her! Pray that she will be able to enjoy life again be able to play with her siblings, play with her toys, play outside in her little kiddie pool, swing on the swing set.... all these things that she just got to enjoy for the first time in her life!!! Can you imagine, living the life she has lived, no family, living in an institution, no one to really care for her and then to have a family for just a few months and then go through such a horrible accident. It just breaks my heart.
Even in my sadness, there is still a ray of hope. How can I adequately explain the peace I have, in spite of the incredible sadness in my heart? I do not have the words to tell you. But I can truthfully tell you it is REAL! I've always been a questioning type of person in all areas, including spirituality/religion. I didn't take everything at face value. I had to
know and I can tell you now I
know that there is a peace that passes all understanding, it's not just a song to me or words in a sermon. Songs and sermons won't take you too far when life's heartaches hit but His peace will. I can't explain it, I'm even a bit shocked by it to be honest!!!
Please don't think I'm some sort of spiritual giant! I am so NOT!!!! Really Really NOT!!! But I've had some practice in the area of trials and the God who brought me through many others, is bringing me through this one. I've never had a particularly outward faith, in that I've not been some great Pentecostal shouter...I don't even like to pray out loud in front of others, I figure I'm praying to God and it is just Not anyone else's business! So I may not measure up to what some think is "spiritual" but I am committed to following God and He is committed to holding my hand! Thank God that I don't have to measure up to man's idea of what a pastor's wife should be! Now I'm not saying, you can just go live in sin and do whatever, the bible gives us specific guidelines BUT we also don't have to be cookie cutter Christians! But we should live to serve God in every area of our life and allow Him to be Lord of our life. But that doesn't mean we all are alike in every way. I used to be a bit envious of people who could be free in worship, but I learned to be comfortable in my own skin and not try to be someone I am not. That is not me, and now that I don't really think about it, I find it so much easier to enter into worship because I'm not comparing myself to anyone else.
So be who YOU are, live a holy life (measured by the Bible not some man made laws/thoughts) Stay balanced, don't use what I'm saying as an excuse to sin, but as an encouragement to be yourself but live yielded to God. Love your family with everything within you. You do not know when life may suddenly change! Hug your kids, cherish every moment, live life in the light of eternity, when you do that, you will stay as far away from sin as you can and as close to God as you can.
Thank you again for your prayers for our sweet LaLa (our nickname for Selah)