I know that this blog is for Max, but I feel that it's very important to not only ask for all of you to pray for us, but for those around us that need them as well.
Little Tessa needs all of you prayer warriors to pray for her. She went in for some tests on Tuesday and they showed that her bladder is larger than normal and that it's oddly shaped. She isn't peeing as much as she should be. They also found a cyst on her spine, which at this point, they aren't too concerned about. I don't know much about the news they got today, but something to do with her intestines not functioning properly. She is also not pooping as much as she should be. They have an appointment on Monday with I believe Dr. Sheldon. This is the urologist that is working with Max.
I plan to call Jessica tomorrow to get a little more information from her and to see if there is anything that we can do. What we need ALL of you to do is to pray that all of this ends up being very minor.
I am having a very hard time dealing with all of this news. It is tearing me apart to think that another family, especially a family who we are so close to, is going through something like this. It's not fair to be living, what's suppose to be the happiest time of your life, in fear. Bringing your first born child home isn't suppose to include going to Children's Hospital to have tests done to figure out what is going on with him or her. It's not fair to have to spend your maternity leave going to numerous doctor visits. All of this is bringing back our first few weeks of Max's life. The fear, the tears, the heartache. It's not fair.
Chris and Jessica, we love you and we are here for all of you. We are praying that all of this passes through quickly and as painless as possible. Tessa is beautiful and very lucky to have the two of you as her parents. I am not going to sit here and tell you not to worry, because it's impossible not to do. It's what parents do. You will worry (a little) about her for the rest of your lives. What I will sit here and tell you is to enjoy her, love her and cherish her.
I have to get this off of my chest. I have been wanting to say it for a very long time, but have kept my mouth shut. I think it's important to make everyone realize how precious life is- even the very small things. Please! Please, remind yourselves every day that things could be a whole lot worse. When something as small as someone cutting you off on your way to work ticks you off, remember that someone else in this world has something much worse happening to them. Maybe that person who cut you off is on their way to the hospital because they just got a phone call that their child or parent has taken a turn for the worse. CHERISH the tiniest of things that your loved ones do. I was jumping for joy and had tears in my eyes the other day because Max had snot and spit! Snot and Spit people! He has lived his life so dry from his hemo dialysis that we have never seen him have snot dripping out of his nose. He does now! When Max whines at me because I am not sitting right next to him playing. I CHERISH that. Think of all of the TINY things that your children do for you. Their smiles, laughs, screams, crys, tears... SNOT!
I have been told so many times, "At least you didn't have to deal with the middle of the night feeds with Max." Do you have any idea how much I would have killed to have those middle of the night feeds? Instead I was waking up and calling 513-636-4466 to check on my son. A number that I will have embedded in my head forever. I couldn't just walk into his room and pick him up to comfort him when he cried. Instead a nurse did that for me. I couldn't nurse my child because he had a breathing tube down his throat or because he didn't know how to. Instead I had to pump my milk so that his nurse could give it to him through a tube in his nose. I couldn't walk more than two feet from my son's bed because he was hooked up to monitors and machines. My son was five and a half months old before I could walk around with him. I don't have those first hospital pictures of my son. I don't have "Baby's first foot prints" of my son. The first time I saw my son was when he had a breathing tube down his throat and was in the NICU. The first time I got to hold my son was at Children's Hospital when he was three days old. It took three people to get him out of bed so that I could hold him. We can't stay out later than 9:00 on the weekends because we have to come home to hook our son up to a machine.
But, I wake up every day and tell myself that things could be a lot worse. There is another family out there who is going through much worse than what we are. The bald little boy that I saw running down the hall riding his IV pole like a scooter the other day makes me realize this. The bald two year old little girl that I saw holding the hand of her daddy (pushing an IV pole) while they look a stroll down the halls of the hospital makes me realize this. The other kids that I spend my Mondays, Wednesdays and Fridays with at dialysis make me realize this. The little girl that I saw in the urology clinic last week that had two prosthetic legs and was WALKING brings be hope. Running into the surgeon who saved my son's life by performing an open fetal surgery in the cafeteria brings me joy. Seeing in the halls the doctors, nurses, respiratory therapists, radiology techs, social workers, lactation consultants, physical and speech therapists, the cafeteria lady, etc. All of these people have gotten us through this tough journey, seeing them brings be happiness. I make it a point to smile at least once a day.
I may live my life in fear and worry, but I live it with a smile on my face and the mindset that things could be a lot worse. My son is alive and doing well, I am married to the greatest guy I know. I have a loving and supportive family and group of friends. I have a PERFECT kidney that I will soon give to my son to improve his lifestyle. I have a roof over my head and food on my table. What else do I need? A healthy child? It would be great, but giving birth to a healthy child would mean that we wouldn't have Max and Max is what makes our lives worth living.
Life is too short to worry about the "tough" times or the "bad" days.
CHERISH your lives! CHERISH your family and friends. CHERISH the tiniest things!
6 comments:
Definitely saying prayers for the beautiful little one! I know what you mean about counting our blessings. So many times we wondered whether or not Logan would make it so even when I'm frustrated because he's into everything I try to just be happy that he's here to be into everything. I'm so grateful that we live in a time when little guys like ours are able to have dialysis. It wasn't too long ago that they wouldn't have been able to do it. Even when things are so hard sometimes, we really do have a lot to be thankful for. Saying prayers that your friend's little one is perfectly healthy.
Very well said. Life does change when someone close to you is ill. We were all just jumping up and down because my 12 year old nieces hair is starting to come back in. She has 1 mm of hair and she is so excited. The day of Abbies brain surgery, I saw a little kid in the hall riding a bike with the handle on the back while his Dad was pushing him and his IV pole. He was so excited! Seeing how happy he was made me smile. I agree with you, cherish snot! Good for you Max! Take care Beth!
Katie Ruschman
Well put Beth. I needed that. T.J.
Those of us living our everyday lives really have no concept of the going-ons in the hospitals, the nursing homes, the hospices, etc..
Your dialogue brings much of this to light and we can only admire your determination and dedication from afar.
Wishing you much slobber (sp) and snot in the future!!!!
DS/BBHS
What a powerful message you sent today. I right this as tears run down my face. You said it all. We complain about the insignificant things and all we have to do is open this blog site and you let us know how life really is. God Bless All of you and we will continue to keep all of you including Tessa and her family in our prayers.
Beth, you brought me to tears. What you wrote is amazing. Prayers for Tessa and Max always.
Agathi
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