We have been so blessed with a healthy winter and last night Reese McClain was diagnosed with RSV. Kyle took her to the ER and when they got home I took over with breathing treatments, medicine, suction and bath time. We will continue to give breathing treatments and suction around the clock. We hope our little girl will be back to her smiling and active self soon!
A very dear friend of mine sent me the link to this sermon a while back but I just recently had the opportunity to watch–WOW! I hope you take the time to listen to this sermon because I think everyone could find something valuable from God’s word.
I will share that he mentions parents of special needs children feel that their child will be invisible to this world. I have to say that is one of my fears for Reese McClain. You hear of parents worrying, complaining about all the activities their child is involved with or how they hope their child gets this or that scholarship/job/position–the list goes on and on. I sit there thinking–I wonder if Reese McClain will even be noticed in this world, will she have a purpose. Then I slap myself back into reality and realize that all those are “worldly views” and those that the world sees as least is who God sees as most.
Reese McClain cannot communicate “I love you mommy” or “I love you daddy” but I know when I say “Reese McClain do you love your mommy” and her face lights up, she smiles and let’s me kiss her face off–she does love me! I’m slowing learning that the value of a person has nothing to do with our ability but our heart/relationship with Christ. When the world tells you “perfection” is what is desired it’s really hard to see imperfection as perfection–but I believe that is what God wants us to do.
Life gets so busy sometimes you just need to slow down and enjoy what is happening around you! Well, Reese McClain is crawling and we are ENJOYING!!!
Her sitter (Juju) reported she saw it on August 16th and then that evening Kyle and I took RMN to PT in Louisville and Amy (therapist) reported that she crawled during therapy. Kyle and I were so excited even though we had not gotten to see her move in person. However, she started moving that weekend! It’s slow… but its progress. I feel like it’s the same experience we had with her sitting up by herself. She would do a little… sometimes follow thru, sometimes not… but once she got the hang of it… she wanted to sit up all the time! I will never forget going to get her out of her crib one morning and she was sitting up clapping. I never thought that day would come… what a glorious day! I firmly believe that her moving is going to make her stronger and stronger. She is reaching and trying to pull up on doorways, chairs, coffee tables—which is also VERY exciting. I have had some ask “what do you believe has helped Reese”? The number one thing that I think has made a difference is prayer–trust in God. Thank you to each of our faithful friends for the continual pray for Reese’s progress–we cannot do this journey without you.
I’m going to be real honest—trusting God is hard! For those that don’t know me… well, I like to be in control of things. I’m a planner, organizer and must be prepared going into situations. So, trusting someone who I cannot physically see or talk things out with in person… is hard! However, I continually relay on scripture and what the bible is telling each and every one of us. I read the other day: Salvation secures our lives for all eternity. Soul satisfaction ensures abundant life on earth. He satisfies you with goodness; your youth is renewed like the eagle. Psalm 103:5 We each can find goodness in God no matter our situation I never in one million years thought I would have a special needs child or been in and out of the hospital with a child like I have experienced but I continually tell God–You have an amazing plan [one much bigger and better than mine] and I must trust you.
The most precious little view ever–Reese McClain on the MOVE!
There are just some days/events/holidays that will remind me of my Grandmother. The Shelbyville Horse Show is one of those events–my Grandmother and David went every night, every year and it was “their” event. My Grandmother would plan all of July what she was going to wear–she always looked stunning! As I write this it brings me to tears because since July 16th there has not been a day that goes by that I don’t think about her or wonder what heaven is like or her. For those that know me–my Grandmother and I were extremely close! When you think “Grandmother” many think old but my Grandmother was young (69) and vibrant. This time last year she was taking care of Reese, making my bed, making sure Reese had every pink item known to man and so much more! There really is no one that can replace my Grandmother in my heart–she was a one of a kind lady. It is not fair that she her life was shortened or that she won’t be there for the birth of my next child. I continue to pray for God to reveal his glory to me with the passing of my Grandmother. I just love the two photos below (birth of Reese thanks to Lizzieloo)… she stayed in the delivery room with me until the very last few minutes and switched off with my sister. I got the shirt she is wearing in this photo and hope to one day make both Reese and I something very special since that was a very special day for us–O’ how I loved having her with me to help with Reese and teach me how to be a good mommy.
That brings me to funeral advice. The most comforting thing that people can do when one dies is to share a happy story about how their love once touched their life or something they remember about the person. I loved hearing stories of about my Grandmother during visitation–it was so touching. So many people loved my Grandmother and thought she was a special lady. More importantly countless people said “she loved her grands” and I know without a doubt that is true. She got to spend 33 years with my sister and 30 with me–what a blessing! So, next time I go to a visitation and I know the person that passed–I will share a memory with those they left behind because I found it the most comforting thing one did for me.
Knowing someone is going to die is a odd/weird experience. I wanted to soak up every moment with my Grandmother because we all knew the end result. I tried to do that as much as possible. I got some really sweet pictures of her and Reese but in some–they just simply weren’t my Grandmother. One of my best friends advised me to write to my Grandmother everything I wanted to say because I couldn’t do it in person–I would have just cried and didn’t want to upset my Grandmother. I was ever so thankful for that advice and did just that…
Grandmother you have been so influential in my life–you’ve helped mold and shape me into the woman I am today. I cannot thank you enough for all you’ve done for me and for Reese–doctors appointments, hospital stays, picking her up from Sproutlings… the list goes on and on. I will cherish all those times you got to spend with Reese and use the many things you’ve taught me like “only good mommy’s lotion their babies” “cover dr. smith’s all over their bottoms” for my next child. You have always been so encouraging about Reese and helping me feel like she is perfect and all is right in the world. I am having a picture printed of you holding her and it will be in her room forever!
The most amazing gift my Grandmother left behind for me or Reese was the letters/notes written in her bible. So incredible… so faithful… and just comforting. I hope to have pictures of all these letters/notes and frame them in Reese’s room…
I would give anything to spend one more day with my Grandmother but I know she wouldn’t want to come back if she had the option because heaven is so wonderful. I catch myself thinking she is like on a vacation and will be back soon so we can chat. I go to her grave side trying to wrap my head around that her body is in the ground but she really is in heaven. I listen to her voicemail she left for Reese that says “Reese it’s Grandmother, it’s Grandmother. Tell your mommy to call me so I can talk you to sleep” over and over and over. What I continually go back to is that our present sufferings do not compare to what he will reveal to us, I will see my grandmother and know her again one day, she is no longer in the excruciating pain that she endured and ultimately this life is all temporary so live each day likes its your last.
Since my Grandmother’s passing of pancreatic cancer I have heard of others diagnosed of it and just pray for them and their families. It’s one ugly cancer. May each of them and their families find peace with our Lord and Savior.
It has been a while since I have written an update on little Miss Reese McClain. She will be 2 this month—where has time gone?!?
Of course, birthday party planning is in full swing!
Sneak Peek of the invitation
Gulf Shores May 2013
Reese has managed not to be admitted into the hospital this past winter/spring and she is still doing really well. We have had 3 ER visits for constipation/UTI something that she battles continuously. We thought we had the constipation thing figured out but then she progressed with her foods and we are back to square one. However, she has really made some steps forward in eating. She will take the spoon/fork from me and feed herself! We are working on her pulling the utensil out of her mouth so when I do hand over and hand—I say “out”. Hopefully, when I say “out” she will remove the utensil rather than me assisting her. She was on all fork mashed foods but now she is doing soft foods that don’t have to be mashed. She is chewing foods great and we couldn’t be more excited about her progress. She is also holding her sippy cup which is a huge accomplishment. We have to add thickening solution to it for now but our goal is by the end of the year to be off of the thickening solution. Reese still takes a bottle before bed—Soy formula and out of a bottle. We are going to transition that formula to a sippy cup in the next month. We are not sure how much longer she will be on formula but for now it helps with her calorie/nutrient intake.
Reese is sitting up by herself from laying position. She rolls everywhere and is getting up on hands and knees (position to crawl). Reese is getting stronger everyday and I know it won’t be too much longer before she is crawling! She is still receiving PT 3-4x’s a week, OT 1x a week and speech every other week.
Besides our daily routines we have been spending lots of time with my Grandmother. She was diagnosed with Pancreatic Cancer this year. Reese loves her Grandmother—she smiles and belly laughs at her every time we visit!
I consider that our present sufferings are not worth comparing with the glory that will be revealed in us. Romans 8:18
Do you ever really “get over” having a special needs child? Well those are words I’ve heard and I am comfortable sharing my thoughts and experience. I think the answer is “NO” and I think anyone that expects you to probably has never experienced pain and frankly are a negative influence in your life.
Do you think anyone gets over the death of a child, spouse, parent… Well, for me it’s like I had two children. One child I grieved and put to rest and the second one who I love more than anything in the world. When you’re pregnant you start to make these expectations up in your head, plans for your child… well when I grieved, I grieved those dreams and expectations to rest. I now have new ones and I love the new ones. But will I ever “get over” what happened and the heartache Kyle and I experienced? Probably not. Can I “get over” my daughter has been to the ER 33x’s and hospitalized 7x’s? I frankly think that is unfair of one to ask—especially someone that didn’t experience the roller coaster and still the many unknowns. What I have learned is to cope (new way of thinking) and a new normal for my family.
I had a friend call me and tell me one of her good friends just found out their child is special needs and what should she do for her friend. I’m a huge believer that we all deal with situations differently. I don’t believe one is right or wrong. I’ve learned that thru having Reese—Kyle and I from the beginning have handled it differently. Again, no right or wrong but what I do believe is other’s should respect the differences in how you handle situations.
The most important thing I had going for me is a ton of people praying for me. The devil was already heavily at work on me because he saw an opportunity in which he thought he could win me over but I had too many people praying, praying. I had a few close friends continually text, call and write bible verses all over my house—not giving up on me. Even on those days I didn’t want to get out of bed (that was during the grieving stage). I found others who had a special needs child that I could talk too. Our situations may have been different but it was someone I could talk to and have a same level of understanding.
I finally accepted it. Did I “get over it” no because it’s something that faces me every single day.
If you know someone is hurting DON’T tell them to get over it. But DO send them a card, pray for them, pray with them, take them a meal… do something that reflects the grace of God.
One thing I’m so thankful for is being able to be open and honest with my girlfriends. I’ve told them do not cut me off from what your kids are doing. I want to know! I remember spending a long period of time worrying that my friends would cut me off because I had a special needs child. My mom told me—you’re not giving them a chance. She was right. I’ll never forget the day one of my friends said, “I want my daughter to know Reese as Reese and love her”. That made my heart melt because I knew she wasn’t going to teach her daughter—Reese is “special needs” but Reese is Reese and fearfully and wonderfully made. Special needs doesn’t define Reese or my family. I have people tell me they didn’t ask us to do something because it was this or that environment. Kyle and I will make those decisions but ask–don’t cut us off because you think… what’s awesome is we will make those decisions for Reese.
Reese is doing extremely well and we are thankful. Many people ask me “well isn’t she doing better than they thought”. I know this is meant with all good intentions… but there isn’t enough research to truly indicate she is doing better than what they thought. Reese has a “ trans-location” of her chromosome (the worse case scenario)…. We were handed a study of 4 girls. The oldest was 8 years old walked, one died at age two and chances are 50% of declining and having seizures as they get older. So they/we don’t know. What I do know is Reese is an amazing gift from God that has humbled me. What I do know is I cannot imagine my life without Reese McClain. What I do know is Reese is teaching me to grow/nurture the relationships that mean most to me. And lastly, that we aren’t guaranteed anything… live/love/respect/give to others like it’s your last day!
What I do know that our present sufferings are not worth comparing with the glory that will be revealed in us (Romans 8:18)
Love this picture of Ruby & Reese because Reese is looking at Ruby like what are you doing in my chair! It was either Ruby or Reese crying on Sunday… they are my two precious little girls!
Love them both so much!
Please continue to pray for my grandmother (Judy) she is battling pancreatic cancer.
She has A LOT to do with the woman I have become–strong, determined, independent … this list could go on for days!
The Easter Story.
Mark 14–The Last Supper
Mark 15–Jesus is Crucified
Mark 16–Jesus is Risen!
I am charged guilty with sometimes becoming consumed with the secular world’s Easter and not the TRUE meaning of Easter. Reese’s Uncle Chase and girlfriend Whitney got Reese a book that tells the true story of Easter! I was so thankful to have that and read with Reese because it was a good reminder to me as well. You can’t avoid the word Death at Easter… are you ready? I cannot wait to walk the streets of pearls and gold–kissing the feet of my heavenly father!
“It is not that God’s help and presence must still be proved in our life; rather God’s presence and help have been demonstrated for us in the life of Jesus Christ. It is in fact more important for us to know what God did to Israel, in God’s Son Jesus Christ, than to discover what God intends for us today. The fact that Jesus Christ died is more important than the fact that I will die. And the fact that Jesus Christ was raised from the dead is the sole ground of my hope that I, too, will be raised on the day of judgment” - Dietrich Bonhoeffer
“The question of why evil exists is not a theological question, for it assumes that it is possible to go behind the existence forced upon us as sinners. If we could answer it then we would not be sinners. We could make something else responsible…The theological question does not arise about the origin of evil but about the real overcoming of evil on the Cross; it ask for the forgiveness of guilt, for the reconciliation of the fallen world “ – Dietrich Bonhoeffer
Above are two of my favorite quotes from the famous Christian theologian Dietrich Bonhoeffer. I’m currently reading the amazing biography “Bonhoeffer: Pastor, Martyr, Prophet, Spy” by Eric Metaxas. Bonhoeffer’s life is absolutely fascinating and his last days on this earth at the end of Nazi Germany are legendary chapters in WWII history. This book has got me thinking and reflecting…..
Today Reese had her tonsils and adnoids removed. Everything went great! Because of her medical issues, they’re keeping her under observation in the ICU for at least tonight. Staying tomorrow night is still currently up for debate and it will be decided in the morning with the doctors. I’m pulling the night shift tonight and it’s currently 2am. As I sit here reading the biography on Bonhoeffer, I couldn’t help but reflect the evil of this world that he confronted and all of us confront everyday. On each side of my daughter are two children that are less than 6 months old. One has a trach tube in her neck. The other is hooked up to more machines than I ever thought possible. In fact, the amount of machines is almost overwhelming to even look at. Every bed in this ICU is full and it stays like that constantly.
Anyone can walk into this ICU and ask God why? Even a strong believer in Christ could ask why. It’s THE question so many believers and non-believers have. Why is there suffering in this world. Why has God allowed it? The fall of this world began in Genisus Chapter 3. Sin entered this world and has consumed it. God has allowed it for reasons we don’t always understand. The one reason we do understand is Jesus. God showed us his glory by sending his only son to die on the cross for us. His ultimate grace lies in his son. Whoever should believe in him shall have eternal life.
Tomorrow or the next day my daughter will go home. Her scars will heal like they always do. She will go back to her therapies, her play time, and her yummy food. She will get many kisses from everyone and her smile will light up every room. Her future is unknown but the odds are, she will be back at this hospital again someday. We all at some point cry out why and God hears those cries. He sent his child to take our place on the cross. The evil of this world can be washed away by the blood of Christ. Do you know Jesus? Have you confessed your sins to him and and asked for forgiveness? Do you want to someday leave this evil world and live for eternity in heaven? Right now I’m surrounded by good and evil, life and death. God’s grace and love is what gets me through these times. I could focus on the evil and let it consume me or I can focus on Jesus. He really is the answer.
After Jesus said this, he looked toward heaven and prayed:
“Father, the hour has come. Glorify your Son, that your Son may glorify you. 2 For you granted him authority over all people that he might give eternal life to all those you have given him. 3 Now this is eternal life: that they know you, the only true God, and Jesus Christ, whom you have sent. - John 17: 1-3
See what kind of love the Father has given to us, that we should be called children of God;
and so we are. The reason why the world does not know us is that it did not know him. 1 John 3:1
Wow, I just noticed we haven’t posted on this blog in over a month! How time flies when you’re having fun. Below is just a quick thanks to everyone and what is next in our journey with Reese. But first a recent picture of our adorable little girl right when she woke up from a nap. Her smile is infectious!
Is it that time of year or what? It seems like everyone is sick. My work looked like a ghost town a few weeks ago as everyone kept passing the same bug around. Also, for a few weeks, the flu was in a full blown outbreak and the ER waiting rooms looked like the line for Splash Mountain. All of this will make parents of medically fragile children sit on the edge of their seats. We worry about every sniffle, every warm forehead, and every single cough. We can’t stress enough how important it is to wash your hands and not come around Reese if you don’t feel well. Thankfully, everyone we know understands this and has been just as diligent as we parents are. Thank you to those who have told us they’re staying away because they’re sick or to not bring Reese to visit them. We understand and are so very grateful when someone tells us this. Thank you everyone for your help!
Now this week we have one last surgery for Reese. She has severe sleep apnea which causes all kinds of issues that she doesn’t need. The only way to remedy this for small children is to have her tonsils and adenoids removed. This surgery is scheduled for this coming Friday afternoon. Usually it’s an outpatient procedure for most children but our Princess Reese always likes to be different. Her doctor expects her to stay overnight in the hospital for one or two nights at the most. The surgery was delayed a few weeks because the surgeon wanted to consult with her other doctors and surgeons since Reese has specific medical issues that need to be adressed before they can proceed.This will of course not be as stressful as the open heart surgery. We’re still apprehensive as always but we haven’t been on pins and needles this time. Once your daughter has had her chest opened up and her heart stopped, all other surgeries seem minor. Yet we do realize that nothing is minor with Reese and we will always be in prayer for her. We ask for your prayers as we make another trip to Kosair Children’s Hospital. We pray for God’s understanding and comfort. We pray our little girl heals from this as quickly as she did her heart surgery. We are so very thankful everyone’s support and prayers!
Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword? As it is written:
For your sake we face death all day long; we are considered as sheep to be slaughtered.”
No in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Jesus Christ our Lord.